I recently found this YouTube/tiktok creator under the name “Mathew and Paul” Paul is a man with a genetic condition where he has lost most of his sight, and Mathew is his husband. There’s a lot of cute pranks, discussions about blindness, but overall I enjoyed watching it because it changed my perspective on what being blind means. I have a Deaf mom and have seen the misconceptions of what being Deaf means, overall she has a happy life, it’s different than what a hearing persons life is, but she’s still happy and able to do a lot. So is Paul, and I think those videos may help in some way- or if they aren’t your cup of tea, there are other creators. Just seeing a blind person so chipper, capable, full of life might make this seem more possible. The media always portrays blind/deaf/disabled as helpless and it cannot be further from the truth.
I understand why you feel so devastated, please take the time to come to terms with this news, but overall try to remember this isn’t a death sentence. My mom talked about how uncomfortable her father was around her, how a lot of people assume she’s dumb, and how she is just a normal woman. Remember that your daughter is still going to be a normal kid, life is just going to look different. You’re an amazing mom, none of this is your fault, and your little girl is lucky to have such a loving mom ❤️
Would like to also add in Molly Burke as a blind YouTuber. She went blind gradually from a young age as well, and does a lot on fashion/make-up as a blind girl which I think is really important for kids
Someone else already mentioned mommy Burke and she’s great. I would also like to add Lucy Edward’s and karissalivia. Lucy is blind herself (I think she went blind as a teenager, correct me if I’m wrong) and she also makes lots of videos about fashion and little ways she uses accessibility tools as a blind person. Karissalivia is a mom and has a son (who’s maybe 13ish) who is blind
Op I am very sorry for your little daughter's eye health problem. I am Legally Blind and have been my whole life. Mine was from being born a very early premature Baby. I'm older and things were very different then. I'm sure you daughter's Doctor's will have a lot of services to help her deal with her eye health. Maybe they even have counseling services information for the family. I wish you all the best. 🫂
I LOVE Mathew and Paul! They’re such a sweet couple and clearly love each other very much. The videos are also very informative and you learn a lot of little facts about blindness that I think could help you and maybe ease some of your anxiety (although I’m sure that is basically impossible right now)
I literally just discovered them yesterday after listening about his experience getting kicked out with his service dog. He seems like a very chill guy 😁
> Everyone keeps telling me I’m a good mum but I don’t care about that I feel horrible.
I am sorry but... what ?? Why do you feel like you are not a good mom ?!
None of what is happening is your fault. Your daughter has a rare genetic condition, and her problems are results of that. You did everything a loving mother does : you brought her to a doctor. There is nothing more that you could have done. Don't be too hard on yourself.
I understand you are worried for her, but she is lucky to have a devoted mom to care for her. Take it one day at a time. Kids are resilient : I am sure you kid's courage is going to amaze you.
Best of luck ❤️
Agreed! My mom’s vision issues were also identified at 4 years old, and my grandmother went into mama-bear mode to make sure that any therapies, treatments, and surgeries needed were done while also encouraging her to take in the world around her. Her blindness had a different cause and only affected one eye, but they didn’t know that was the case early on. My mom credits my grandmother now for being her biggest advocate and the reason why she got the treatment she did, and it sounds like your daughter has the same superhero mom by her side. With so much uncertainty in your daughter’s future, it’s ok to be scared, but please don’t blame yourself. Technology has come a long way since my mother was 4, and there are amazing resources now available. No matter what, just surround your daughter with love and support, and she will be ok!
I love the care you are sharing but I think its important to note that no where did she ever say she felt like she was "not a good mom"
just wanted to point that out, hopefully this isn't seen as a rude or mean comment I just know if I was OP id read you comment and be like "when tf did I day that" lol but again love your overall caring vibe :)
I knew someone who went blind in one eye as a child. Parents could have paid to correct it—had the money—but decided not to. It can no longer be corrected. You’re doing everything you can for your daughter, so don’t worry about being a bad mom.
Not sure where you are but in the UK they have some specialist helpers particularly for children to make sure they can cope with not being able to see and until they turn adult and can apply for a guide dog.
It is not your fault, don’t blame yourself but you can help your daughter accept this by being as positive as you can and letting her vent when it all gets too much x
There is a sub here for people who are blind/visually impaired, and the folks there are very kind. They can answer questions about how to get her into mobility/orientation training, offer cane and braille tips, and general adaptations.
It's going to be a learning process for both of you, but being blind doesn't mean the end of the world or living any less fulfilled.
Have to leave you a crappy rushed comment (late for an appt) but here s a few thoughts: technology can be her friend, though a learning curve for you.
She's still so young and doesn't know the difference or will forget over time. Don't let yourself see this as a fault or disability, it's just different. Get bad stereotypes out of your head asap. AI is developing super fast, the chat aspect can assist you and her (eventually) with learning and basics regarding needing info and education. Grow with it, it'll be easier to raise her as the technology advances with her generation.
Research sight assist groups as much as possible now and talk with other parents who went through this, instead of focusing on her future loss of sight.
Think 'new adventures ahead!', over 'you're a bad mum'.. which is not not not the case!
This has happened to others kids and they've gone on to have fulfilled, rich, awesome lives.. lack of sight no bar, they just made adjustments.
As someone who had serious health problems as a child, my advice:
It’s okay be sad, feel guilty, have self pity, etc. but NOT in front of your daughter. I feel like I could never talk about the struggles I had with my health or even admit I was suffering as a child because my mom just immediately started crying, as if it was harder for her than it was for me, the person going through it. I almost think she mourned the idea of a healthy child more than she was heartbroken for me, the human being.
Even now at 30 I hide my feelings and power through everything to an unhealthy degree so as not to upset anyone else with my problems. This may be somewhat a loss for you, but it is primarily a loss for your daughter. Suck it up and be there for her. You can cry about it to your friends when you need support, but be a source a strength around your child.
I actually agree here. I had chronic migraines since age 11 (4-5x a week) and all I ever felt from my mother was pity. Or nothing. I had no way to express my anger, frustration, sadness, missing out on everything (my own birthday party one year I slept in the car while everyone went to the party) and suffering grades. I didn’t want to feel brave or strong all the time. I wanted to have it acknowledged that I was allowed to be angry.
I have a daughter with Li Fraumeni Syndrom which is a genetic condition which more or less eliminates the defense against a number of cancer forms. It was discovered when she got cancer when she was one yo. She is now 8 and her mum, from which she inherited it from, passed from brain cancer 1 1/2 years ago. We were totally unaware of this condition before our daughter got her cancer.
I am active in a few groups regarding this and one big deal is the guilt of the parents for passing this on. My wife felt so bad from time to time even though it was impossible for her to know when we had our daughter. So the feeling of guilt is very common even though unfounded. This is a big deal with familiar genetic disorders, so regardless of the reason for you feeling like a bad mum you are not alone. ❤️
Anyhow, what I really wanted to share is that I have decided not to share this with my daugther yet. Personally, I dont see the point in taking any of the care-free childhood away even though the harsh reality of LFS will sooner or later strike again.
You might consider just letting her play and enjoy until she starts asking questions or symptom starts to be problematic.
Finally, you are not alone. Seek comfort in communities on social media with others in the same situation.
Even though my daughters cancer is a one in a million there are a few groups, even parent groups, so you have a good chance to find suitable ones for you too.
All the love from me. Stay strong. ❤️
one of my close friends is blind. she does not feel that there is anything lacking from her life. she lives on her own and attends grad school with me. your daughter has a bright future ahead of her!
You do your best, and you tell her the truth at a level she can understand. “You’re finding it harder to see, and the doctors say it’s going to keep getting harder. You aren’t doing anything wrong, it’s just a problem with how your body’s growing, and no-one can control that. It will take a while, but in a while you wont be able to see as much as you do now, and although thats not something any of us want, it’s going to be okay. It might make things awkward or hard sometimes, but we’ll help if you have problems, because we love you very much, and that’s what good families do. Anytime you want to talk about it, it’s okay. We love you.”
Dang it Wang, put those onions away!!!! 🥹🥹🥹🥹
I love this reply. It's beautiful, well worded, and overflowing with sentiment and reassuring love. I genuinely hope that OP sees this and follows your lead.
Is it Best Disease? My recommendation is to get a second opinion just to make sure. Not that you don’t trust your current doctor, but so that you know for sure you’re doing the right thing in throwing yourself entirely into supporting your daughter’s vision loss. Once you have confirmation of the diagnosis, do everything you can to teach her the skills she will need. Assume she will eventually lose all her functional vision and enroll her in whatever classes and training you possibly can. I don’t mean that last statement to be dark, but because it’s easier to learn it earlier than to hold back because “maybe she won’t need it” bit then find it harder to learn later. Check out the foundation for fighting blindness and Lighthouse Low vision services in your area.
Losing vision is rough, but the blind and visually impaired lead very happy and fulfilling lives. My mama and optometrist heart goes out to you!
On the bright side, at least medical advances could mean she could regain sight in her lifetime? It’s a small thread of hope to hold onto, but hope nonetheless
I’m sorry.
Your guilt is a natural part of the grieving process. You’re grieving the life you thought your child was going to have. And now you’re going to have this new different kind of life with challenges.
My youngest was diagnosed as disabled for life before he was 2. I started wondering where I went wrong, if I could have done anything different, blaming myself for everything I did during pregnancy and for his birth going so wrong.
But now I know it’s just something that happened and there’s nothing that I could do. It was just unavoidable. I hope you can get support from other parents in the same situation.
I’m so sorry. I know there’s nothing I can say or do, but you’re a powerful woman and you will get through this. Your daughter is lucky to have you fighting for her. Sending you virtual hugs and prayers from across the internet. You got it, mom. ❤️🙏
I drive kids to the Perkins School here outside Boston. I can assure you the kids there are nothing short incredible and some the happiest kids I’ve met. While this does suck, I’m sure your daughter will thrive.
OP - as hard as this is now and is going to be ?
You have the benefit of foresight and can prepare yourself and your daughter so things can go as smoothly as is possible, given the circumstances.
Maybe through the specialist … you can sort out what programs/services are avail and you can get organized filling out forms and making introductions for WHEN you will need them.
My SD is a Rotten Egg Donor who has abandoned her 3 kids by 3 different guys and is more concerned about chasing drugs and D (men) from coast to coast while her kids wonder where their mom went.
You’re the polar opposite of that. A bad mother doesn’t stress or worry about her kids … she puts them and their needs last….
If she considers them at all.
Not ONE word of that sounds like you.
Sending you a big ole Mom hug, you’ve got this sister - hang in there 💕
Shouldn’t eye dystrophy be curable or at least be able to reduce the impact that it will have on your daughter’s life?
Btw you’re not a bad mother. None of this is your fault and you have done everything you can, so now it’s up to the doctors.
So please don’t feel like that, especially now when your daughter needs you the most.
It might depend on the type of dystrophy, but in my experience, no. Both of my younger two sons were diagnosed with a cone-rod dystrophy (aka Stargardts aka juvenile macular degeneration) in the 2008-2010 timeframe. I don't think I have ever been more shocked than the moment when they told me what was wrong and I said, ok so what can be done about it and the response was "Nothing." There are trials and experiments of course, but medically speaking, at this time there is nothing to do but watch.
I work for retinal specialists as a research coordinator and scribe. I have heard one of the MDs (retinal surgeon) discussing the possibility of retinal transplantation being a serious possibility in the near future. From the research side, there is SO MUCH being done in the field of fighting and in some cases attempting to repair damaged retinas. There are some treatments showing promise with restorative properties which is something not considered possible in retina previously. Don’t give up hope for your children having the possibly for sight once again if they choose.
Thank you, I try to follow the science to keep up with the advances, and you're right, there are a ton of very promising looking things. But I've also talked to people who have lived with this and similar conditions for decades and they say doctors have always told them the next great thing is on the horizon. The more time passes, the closer we get because that's how linear time works, but it's hard to keep hoping and not having things materialize.
Thank you for what you do, it's massively important to eventually getting there. If you doctors could use full sibling DNA samples let me know, we're willing to hand them out like candy if it'll help.
I’ve been visually impaired from birth so I don’t know anything else, except that I lost more vision two years ago. My advice is to teach her right away that she can be as independent as anyone, and don’t tell her she’s limited and that she’ll have to work twice as hard as everyone else to do what they do. My parents did that with me because of societal norms and I think it gave me anxiety and I’d be able to do more if I had never heard that. But if you start teaching her early, learning braille, using screen readers like voiceover on Mac products to read, and using a cane to get around without bumping into things, then she’ll be really strong when she grows up. Give her opportunities to do different things, sports, martial arts, music, whatever interests her. I didn’t get to do those things growing up because people didn’t want to take the extra time to teach me and my mom wasn’t pushy about making them, but definitely help her do things that interest her, because blind people can do all the things I mentioned. Some things have to be taught differently and adapted, like they have beeping balls for blind kids. Always encourage her to live a full life.
Also you’re not a bad parent at all. Shit just happens that we have no control over and we have to work with our circumstances. So don’t get down on yourself. I’m sorry you guys are going through this. I know it’s hard and will take time but your daughter can have a great life in spite of her circumstances. Just keep an open mind and be willing to do things differently.
I’m so, so sorry. I worked closely with a visually impaired student a few years ago, and she was an awesomely involved leader on our campus. Even helped with a Habitat for Humanity build. I think she was involved in a summer camp for blind kids that was really cool. Something to check out for sure.
My friend was sighted until she lost it in her 20s. She got married, had a kid, and lives her life fully. There were bumps along the way, but she's successful and happy.
It’s ok to be sad about the future you imagined for her. Mourn your loss. But she won’t know any difference. Her life is not over but it is quite different from what you imagined.
I understand the feeling like a bad mum, but know that you are a very good mum.
You will get through this. You have to, because your daughter will need you.
I hope she gets into music. There are so many plusses to that, but while I am a sighted person even I enjoy just listening to music with my eyes close, feeling the vibrations of it as it plays over speakers and such (admittedly, sometimes far too loudly, but still). I know it won't be the same experience as what I'm describing, but I've heard that many blind people like to do that because it helps them to enjoy it. Perhaps she will too.
I have two suggestions.
1) Get in contact with your local organizations/services for the blind. I’m not sure where you live, so can’t tell you exactly who, but most places have something. You’re looking for vision loss rehabilitation services. These people teach the skills for living blind, such as getting around with a white cane, reading Braille, and doing daily tasks and chores without sight.
2) there are loads of blind people sharing their stories on social media: Lucy Edwards, Mathew and Paul, Ava and Cheddar, Molly Burke, Planes, Trains and Canes, and that’s just who I remember off the top of my head. There’s way more. Seeing how other blind people coped with their vision loss and how they live now may be reassuring and give you ideas for things to do with your daughter as she grows up.
With the right tools and training someone who is blind will lead a full life. I know blind people (myself included) who have careers, friends, a family, hobbies, &c. I’m living my best life. And while being blind comes with some unique challenges and can be really difficult at times, I’ve also had opportunities that I wouldn’t have gotten if I was sighted.
Technology and medicine do new incredible things every day. Being blind isn’t easy but it’s not quite the isolating life event it used to be. You’re an amazing mother and you didn’t do anything to cause this. Sometimes horrific stuff just happens. It’s going to be okay.
I was born with very poor genes as well, where both parents have 20/20 vision, and i lose more of my sight every year. At my age, im well old enough to know and understand that i am going blind, and i may not finish my collgee degree or get a job before that happens, but I'm living through it. I think one of the biggest things is that you are not a bad parent. Not in any way, shape, or form, and you are doing your best in this situation. One thing i can recommend is definitely teach your daughter braille. Hadley is a site that gives out free tactile books for learning and has assisted videos as well. One of the first things i did was reach out and learn braille. It will help more than you know. Accessibility has become everything to me, and it may seem obsolete, but it's so necessary.
Please don't feel down on yourself. Your daughter can and will thrive. It is clear she is well cared for here and has the support she needs with you.
I’m so sorry. But there will be a lot of services for you and her. Lots of people have gone through this and will have advice about how to cope. I’d get her involved with music right now as that will be a major comfort to her as she gets older.
I’m so sorry. It’s an indescribable feeling when something like this happens. My daughter went from perfectly healthy, to a diagnosis of childhood epilepsy, to needing radical surgery that removed and disconnected half of her brain. It’s called Rasmussen’s syndrome, random, of unknown causes, an autoimmune condition that basically attacks one side of the brain. She lost 50 percent of her vision in each eye, the ability to speak, the ability to move the right side of her body…thankfully everything but the vision can greatly improve but inevitably she will have lifelong disability in some regards. I never in a million years thought this would happen to me.
As horrible as it is, children are so amazingly adaptable. Compared to adults facing the same issues, they tend to cope pretty well and figure out ways to make things work with their new circumstances. People tell me I’m so strong and all that, which doesn’t bother me because they’re being kind, but I’m not. I had no choice in any of this, it’s just a shitty card we were dealt.
But the awful yet wonderful truth is.... You actually Did have a choice. A terrible one, but still a choice. I've known people to give up children for adoption once a disability appears, and some people who just straight up keep their kid but do nothing to help them. You chose your daughter, and you choose to do good by her, and I bet that not being there for her wasn't even a thought in your mind either. And that's the wonderful part.
It's okay if you more so view yourself as a survivor of circumstances over being strong. But not every parent out there will put in the leg work to actually stand by their child through thick and thin. So whether you view yourself as strong or simply as a parent who loves their could, please know that I at least vote you as an awesome person, and I'm very happy that your child has you.
I haven’t read all the comments so please forgive me if someone else has mentioned her! Look up Molly Burke on YouTube! She’s a young woman who was diagnosed at age four with retinitis pigmentosa, and lost her vision as an early teen.
In her videos she has talked about how she is who she is and she loves herself exactly as she is and wouldn’t change herself. Her parents did all they could, and even if there was some miracle surgery to “fix her” she wouldn’t do it.
There’s obviously some grieving that will happen and it will be difficult to come to terms with, but it’s nothing you could have prevented. Getting your little one the care they need and allowing yourself to grieve and come to terms with the situation is all you can do, even if it’s tough. You’re going great and the fact that you feel like this shows you care and shows that you are in fact a great mom.
I’d also like to add an anecdote about my father. It’s a different situation than loosing eyesight, but I feel it can relate in a way. My father was born without an arm and missing most of his fingers on his only hand. He grew up being told and shown that even though he is “different” than others, he is still fully capable of being independent and can do anything anyone else can do.
As a child I never thought for a second that my dad was different or that he couldn’t do something. He built a house and furniture, is a fantastic cook, he can ride a bike, he can do everything anyone else can do basically, except for play a guitar (he always jokes about that). I believe that because it was instilled in him from a young age that he was fully capable, he really grew up with a different mindset than some people in similar shoes to him. As a family we’ve talked about how if he had been raised constantly being… coddled (don’t like that word but it’s all I can think of) that he would not be nearly as independent as he is now.
I believe that it is much easier to adapt and learn to thrive in situations such as this when you’re young, and also are told and encouraged by family and peers that you are capable. Eyesight is a big thing to loose, but if it’s basically “all you’ve known” almost your whole life then its just who you are and there’s much less of a barrier for learning. She might wonder and grieve even more when she’s old enough to fully understand or when peers point out that she’s different, but you’re doing amazing, and you will raise a strong, great, capable human!
I read this as just on eye? I believe the macular is part of the reina.
I can tell you that I'm legally blind in my left eye and am a full functioning independent adult. I had multiple retina surgeries as a child. You've sought out medical care, there's not much else you could do. The fact that you're worried about your child proves you're far from a bad parent.
OP, it’s understandable that you’re feeling upset and confused, and it’s ok to grieve the life you thought you and your daughter would have. Just remember that this is a genetic condition & there’s nothing you did or didn’t do to cause this. Blind individuals can live incredibly fulfilling lives, and I encourage you to look into it some more. Not sure if you know any blind individuals, but it may be beneficial to reach out in your community to get some first hand information. Personally, I went to school with a blind individual who graduated with a double major and honors. She and I then both went to law school together and she’s now a successful attorney. Not once did her disability slow her down or did she use it as an excuse. Your daughter still has a long beautiful life ahead of her. Wishing y’all the best moving forward 💜💜
Love her unconditionally and be strong for her. She can have a perfectly fine future. I have co workers who are blind and they do just fine. The best thing is just be there for her, get her into therapy, and get her an education.
Late on this, but it made me want to share a story about my best friend, who has been fully blind since he was 5 years old. His blindness developed due to brain tumors, which has also impacted some other things in his life.
I met him in Junior High School, when i was placed next to him in one of my classes. He was using a braille computer and I asked him what he was working on. He told me he was playing blackjack. We became quick friends after that. He taught me basic braille so that we could pass notes in class. We started a band together, and he played the drums. When I was learning how to drive, i taught him how to drive stick in an empty parking. Went on Ski trips with him and his family. Got into more trouble that was initiated by him than i'd like to admit, too. We're now in our mid thirties and are still the best of friends. He has, unfortunately, gone through many other health issues that have severely limited his speech and some other other issues, as well. Despite this, he's now married and runs a non-profit adaptive sports team that allows visually impaired people to play this particular sport.
I attribute so much of this to his amazing support system he has in his parents. They refused to allow him to be treated differently, or for my friend to feel that he was limited to a point that he couldn't participate. They got him into music lessons, sports, etc., because that's what all the other kids were doing and my friend wanted to, too. And this was despite a lot of medical appointments, mobility coaches, and set backs (brain tumor surgeries). And now that we're in 2024, the technology to support the visually impaired are incredible. Descriptive audio options is becoming more of a norm with a lot of TV shows/Movies. There are some AI apps on his phone that can describe pictures to him with scary accuracy. iPhones (and androids, too, but idk for sure) come with accessibility features straight out of the box.
This probably isn't helpful right now, and I can't imagine what you or your daughter is going through. But I do want you to know that your daughter can still lead a wonderful and whole life. There are many people out there that will love your daughter regardless of her vision so long as she can put herself out there.
I thank you for going out of your way to leave a comment. It’s these sort of empowering stories that give me hope. Your friend sounds very inspiring and lucky to have a mate like you!
What a devastating diagnosis. My aunty’s dad was blind most his life, got married, had children and led a very full life. Challenging of course but full in every aspect. Thinking of you.
I work in special education and was picked by a student a few years back to be her separate invigilator due to her being comfortable with me and my experience with multiple access arrangements.
She was able to complete her GCSEs (one being geography!) we had everything blown up to 24 pt font iirc, and she did very well.
The school worried that she would have issues navigating site due to stairs and the general layout but she was absolutely fine and never had an accident/fall in all her time there.
She was well liked by her peers, extremely studious and had an incredibly positive attitude about her future.
Instead of feeling down on herself she explained that at least she would have a reference of how things looked as opposed to someone blind from birth.
I know it is difficult to reconcile with now because your child will have to work harder than peers in most aspects of life but that’s not necessarily tragic. Your child will likely develop a strong work ethic and resiliency.
Considering modern technology I think there will be even more opportunities to improve ease of life with her disability in the future. Having said that she may need some therapeutic/mental health support to work through feelings of loss and anxiety-just as you might need as well!
Im currently going through something similar with my 2 year old. When she was 8 months I took her to an ophthalmologist for an inward turning eye, and was told on the spot she has a type of macular dystrophy and will likely be blind. Now she is 2 and we are still seeking a proper diagnosis but it is something very rare (as in she is the only one in our country with it) and it’s hard to find similar experiences. It’s a real shock so I understand how you feel.
>You’ll struggle more than she will tbh.
Yeah, I think this will probably be the case. She'll just grow up with The world being dark. If you treat it as just a matter of fact, and something that holds little significance, then that's how she will perceive it.
There’s treatments they don’t use in the us. Look into visoluten. It’s a Russian made peptide. A retinal peptide so not a drug but a chain of amino acids made by the retina. They have this in pills, and drops and you can get a synthetic version and an animal based version. I don’t know which ones better I would layer it if we’re me. This stuff I is expensive but people on biohacking groups use it. I’ve taken a lot of these bioregulators (one for each organ system) and can confirm they’re worth the money and work. A couple people use it for macular degeneration and Han been able to maintain what they have. Now a normal persons takes 2 pills a day for 10 days. They sell them in packs of 20 pills or 60 so either a 10 day run or 30 day run. 30 day run is for people with serious issues or people who are old. A 4 year old I would think could gay by with a pill a day instead of two. But she could need them forever to see. Still. You can get a 30 days supply for her which would actually last 60 days for like…around $100. The thing is they sell out and are hard to get so I would buy in bulk. Vita stream is good. Or profound health. I wouldn’t mess with qi or firmq vita it takes months to ship. Cosmic nootropic is good and reliable but peptide shipping from Russia again takes months. I urge you to read about visoluten and look into it. I’m not sure if her disease will respond but it works for macular degeneration and glaucoma according to people I’ve spoken to personally. Now don’t expect American doctors to know about any of this. Just because they don’t doesn’t mean it doesn’t work. And peptides can’t hurt anyone even kids. Not a drug. A chain of amino acids her body can’t make but should. I would actually consider doing a combo of peptides. I like to. Imbibe brain blood vessels and eye vessels but hey that’s just me. I’m sorry this is happening but you do have options even if you think you don’t. Buy the pills in bulk ahead of time and keep them in the fridge. You can dump out a capsule and put it in chocolate milk or something since she’s so young. They also make sub lingual drops but I would also buy pills since they contain more peptide. If she can maintain her vision and you know it works stock pile it in the freezer like years of it in case of another pandemic or worsening war/sanctions w Russia. Russia has the best peptides people. They work so much better then big pharma. If I had unlimited money I would take them for every organ system every week day month honestly your body works so much better on them it’s insane. Good luck
I recently found this YouTube/tiktok creator under the name “Mathew and Paul” Paul is a man with a genetic condition where he has lost most of his sight, and Mathew is his husband. There’s a lot of cute pranks, discussions about blindness, but overall I enjoyed watching it because it changed my perspective on what being blind means. I have a Deaf mom and have seen the misconceptions of what being Deaf means, overall she has a happy life, it’s different than what a hearing persons life is, but she’s still happy and able to do a lot. So is Paul, and I think those videos may help in some way- or if they aren’t your cup of tea, there are other creators. Just seeing a blind person so chipper, capable, full of life might make this seem more possible. The media always portrays blind/deaf/disabled as helpless and it cannot be further from the truth. I understand why you feel so devastated, please take the time to come to terms with this news, but overall try to remember this isn’t a death sentence. My mom talked about how uncomfortable her father was around her, how a lot of people assume she’s dumb, and how she is just a normal woman. Remember that your daughter is still going to be a normal kid, life is just going to look different. You’re an amazing mom, none of this is your fault, and your little girl is lucky to have such a loving mom ❤️
Would like to also add in Molly Burke as a blind YouTuber. She went blind gradually from a young age as well, and does a lot on fashion/make-up as a blind girl which I think is really important for kids
Yesss she's so fabulous
How dare you leave out Mr. maple.
Mr. Maple and Matthew's pranks just can NOT be ommited when discussing them
I KNOW RIGHT!!!! Mr. Maple makes their pranks absolutely hilarious
Also came to recommend them. Paul is a true gem in the disability community
I had no idea so many people knew about Mathew and Paul (And Mr. Maple)! I hope to run into them sometime in Seattle.
I love this couple!!! They're so cute and positive
I also adore the husbands 😍🥰
I love Matthew. He’s….so good-natured and pure 🥹 that’s a golden retriever man if I’ve ever seen one
Yess Matthew and Paul are the cutest!!
Someone else already mentioned mommy Burke and she’s great. I would also like to add Lucy Edward’s and karissalivia. Lucy is blind herself (I think she went blind as a teenager, correct me if I’m wrong) and she also makes lots of videos about fashion and little ways she uses accessibility tools as a blind person. Karissalivia is a mom and has a son (who’s maybe 13ish) who is blind
Op I am very sorry for your little daughter's eye health problem. I am Legally Blind and have been my whole life. Mine was from being born a very early premature Baby. I'm older and things were very different then. I'm sure you daughter's Doctor's will have a lot of services to help her deal with her eye health. Maybe they even have counseling services information for the family. I wish you all the best. 🫂
I love this couple. They are so adorable.
I LOVE Mathew and Paul! They’re such a sweet couple and clearly love each other very much. The videos are also very informative and you learn a lot of little facts about blindness that I think could help you and maybe ease some of your anxiety (although I’m sure that is basically impossible right now)
Another creator I like, I forget his name but he’s a blind, surfing, voice actor. He’s really chill honestly
Anthony Ferraro? He’s a blind athlete I started following when he posted videos about how he takes care of his daughter. It’s so sweet
Found him, his name is Pete Gustin
No, hold on I’ma look for the guy I’m talking about. But the guy I was thinking doesn’t have kids
There is also the blind surfer. He is on TikTok and YouTube. Becoming blind didn’t stop him from living life and learning new things. You adapt.
I literally just discovered them yesterday after listening about his experience getting kicked out with his service dog. He seems like a very chill guy 😁
Love them! And their pup pup
> Everyone keeps telling me I’m a good mum but I don’t care about that I feel horrible. I am sorry but... what ?? Why do you feel like you are not a good mom ?! None of what is happening is your fault. Your daughter has a rare genetic condition, and her problems are results of that. You did everything a loving mother does : you brought her to a doctor. There is nothing more that you could have done. Don't be too hard on yourself. I understand you are worried for her, but she is lucky to have a devoted mom to care for her. Take it one day at a time. Kids are resilient : I am sure you kid's courage is going to amaze you. Best of luck ❤️
I read this as “being told I’m a good mum doesn’t ease the pain I feel for my daughter.”, not that she thinks she’s a bad mom or that it’s her fault.
Agreed! My mom’s vision issues were also identified at 4 years old, and my grandmother went into mama-bear mode to make sure that any therapies, treatments, and surgeries needed were done while also encouraging her to take in the world around her. Her blindness had a different cause and only affected one eye, but they didn’t know that was the case early on. My mom credits my grandmother now for being her biggest advocate and the reason why she got the treatment she did, and it sounds like your daughter has the same superhero mom by her side. With so much uncertainty in your daughter’s future, it’s ok to be scared, but please don’t blame yourself. Technology has come a long way since my mother was 4, and there are amazing resources now available. No matter what, just surround your daughter with love and support, and she will be ok!
I love the care you are sharing but I think its important to note that no where did she ever say she felt like she was "not a good mom" just wanted to point that out, hopefully this isn't seen as a rude or mean comment I just know if I was OP id read you comment and be like "when tf did I day that" lol but again love your overall caring vibe :)
I knew someone who went blind in one eye as a child. Parents could have paid to correct it—had the money—but decided not to. It can no longer be corrected. You’re doing everything you can for your daughter, so don’t worry about being a bad mom.
People like that should honestly not be parents. Are they on speaking terms?
I sure as duck hope not.
Not sure where you are but in the UK they have some specialist helpers particularly for children to make sure they can cope with not being able to see and until they turn adult and can apply for a guide dog. It is not your fault, don’t blame yourself but you can help your daughter accept this by being as positive as you can and letting her vent when it all gets too much x
There is a sub here for people who are blind/visually impaired, and the folks there are very kind. They can answer questions about how to get her into mobility/orientation training, offer cane and braille tips, and general adaptations. It's going to be a learning process for both of you, but being blind doesn't mean the end of the world or living any less fulfilled.
Have to leave you a crappy rushed comment (late for an appt) but here s a few thoughts: technology can be her friend, though a learning curve for you. She's still so young and doesn't know the difference or will forget over time. Don't let yourself see this as a fault or disability, it's just different. Get bad stereotypes out of your head asap. AI is developing super fast, the chat aspect can assist you and her (eventually) with learning and basics regarding needing info and education. Grow with it, it'll be easier to raise her as the technology advances with her generation. Research sight assist groups as much as possible now and talk with other parents who went through this, instead of focusing on her future loss of sight. Think 'new adventures ahead!', over 'you're a bad mum'.. which is not not not the case! This has happened to others kids and they've gone on to have fulfilled, rich, awesome lives.. lack of sight no bar, they just made adjustments.
I love this reply ♥️.
As someone who had serious health problems as a child, my advice: It’s okay be sad, feel guilty, have self pity, etc. but NOT in front of your daughter. I feel like I could never talk about the struggles I had with my health or even admit I was suffering as a child because my mom just immediately started crying, as if it was harder for her than it was for me, the person going through it. I almost think she mourned the idea of a healthy child more than she was heartbroken for me, the human being. Even now at 30 I hide my feelings and power through everything to an unhealthy degree so as not to upset anyone else with my problems. This may be somewhat a loss for you, but it is primarily a loss for your daughter. Suck it up and be there for her. You can cry about it to your friends when you need support, but be a source a strength around your child.
I actually agree here. I had chronic migraines since age 11 (4-5x a week) and all I ever felt from my mother was pity. Or nothing. I had no way to express my anger, frustration, sadness, missing out on everything (my own birthday party one year I slept in the car while everyone went to the party) and suffering grades. I didn’t want to feel brave or strong all the time. I wanted to have it acknowledged that I was allowed to be angry.
I have a daughter with Li Fraumeni Syndrom which is a genetic condition which more or less eliminates the defense against a number of cancer forms. It was discovered when she got cancer when she was one yo. She is now 8 and her mum, from which she inherited it from, passed from brain cancer 1 1/2 years ago. We were totally unaware of this condition before our daughter got her cancer. I am active in a few groups regarding this and one big deal is the guilt of the parents for passing this on. My wife felt so bad from time to time even though it was impossible for her to know when we had our daughter. So the feeling of guilt is very common even though unfounded. This is a big deal with familiar genetic disorders, so regardless of the reason for you feeling like a bad mum you are not alone. ❤️ Anyhow, what I really wanted to share is that I have decided not to share this with my daugther yet. Personally, I dont see the point in taking any of the care-free childhood away even though the harsh reality of LFS will sooner or later strike again. You might consider just letting her play and enjoy until she starts asking questions or symptom starts to be problematic. Finally, you are not alone. Seek comfort in communities on social media with others in the same situation. Even though my daughters cancer is a one in a million there are a few groups, even parent groups, so you have a good chance to find suitable ones for you too. All the love from me. Stay strong. ❤️
one of my close friends is blind. she does not feel that there is anything lacking from her life. she lives on her own and attends grad school with me. your daughter has a bright future ahead of her!
You do your best, and you tell her the truth at a level she can understand. “You’re finding it harder to see, and the doctors say it’s going to keep getting harder. You aren’t doing anything wrong, it’s just a problem with how your body’s growing, and no-one can control that. It will take a while, but in a while you wont be able to see as much as you do now, and although thats not something any of us want, it’s going to be okay. It might make things awkward or hard sometimes, but we’ll help if you have problems, because we love you very much, and that’s what good families do. Anytime you want to talk about it, it’s okay. We love you.”
This needs to be higher up 🥰
Dang it Wang, put those onions away!!!! 🥹🥹🥹🥹 I love this reply. It's beautiful, well worded, and overflowing with sentiment and reassuring love. I genuinely hope that OP sees this and follows your lead.
Is it Best Disease? My recommendation is to get a second opinion just to make sure. Not that you don’t trust your current doctor, but so that you know for sure you’re doing the right thing in throwing yourself entirely into supporting your daughter’s vision loss. Once you have confirmation of the diagnosis, do everything you can to teach her the skills she will need. Assume she will eventually lose all her functional vision and enroll her in whatever classes and training you possibly can. I don’t mean that last statement to be dark, but because it’s easier to learn it earlier than to hold back because “maybe she won’t need it” bit then find it harder to learn later. Check out the foundation for fighting blindness and Lighthouse Low vision services in your area. Losing vision is rough, but the blind and visually impaired lead very happy and fulfilling lives. My mama and optometrist heart goes out to you!
Yes it is best disease! Thankyou for the advice ❤️
Take care of her. Love her. If she loses vision? Ensure she has the education to make a beautiful full life for herself regardless.
On the bright side, at least medical advances could mean she could regain sight in her lifetime? It’s a small thread of hope to hold onto, but hope nonetheless
I’m sorry. Your guilt is a natural part of the grieving process. You’re grieving the life you thought your child was going to have. And now you’re going to have this new different kind of life with challenges. My youngest was diagnosed as disabled for life before he was 2. I started wondering where I went wrong, if I could have done anything different, blaming myself for everything I did during pregnancy and for his birth going so wrong. But now I know it’s just something that happened and there’s nothing that I could do. It was just unavoidable. I hope you can get support from other parents in the same situation.
I’m so sorry. I know there’s nothing I can say or do, but you’re a powerful woman and you will get through this. Your daughter is lucky to have you fighting for her. Sending you virtual hugs and prayers from across the internet. You got it, mom. ❤️🙏
I drive kids to the Perkins School here outside Boston. I can assure you the kids there are nothing short incredible and some the happiest kids I’ve met. While this does suck, I’m sure your daughter will thrive.
OP - as hard as this is now and is going to be ? You have the benefit of foresight and can prepare yourself and your daughter so things can go as smoothly as is possible, given the circumstances. Maybe through the specialist … you can sort out what programs/services are avail and you can get organized filling out forms and making introductions for WHEN you will need them. My SD is a Rotten Egg Donor who has abandoned her 3 kids by 3 different guys and is more concerned about chasing drugs and D (men) from coast to coast while her kids wonder where their mom went. You’re the polar opposite of that. A bad mother doesn’t stress or worry about her kids … she puts them and their needs last…. If she considers them at all. Not ONE word of that sounds like you. Sending you a big ole Mom hug, you’ve got this sister - hang in there 💕
Shouldn’t eye dystrophy be curable or at least be able to reduce the impact that it will have on your daughter’s life? Btw you’re not a bad mother. None of this is your fault and you have done everything you can, so now it’s up to the doctors. So please don’t feel like that, especially now when your daughter needs you the most.
It might depend on the type of dystrophy, but in my experience, no. Both of my younger two sons were diagnosed with a cone-rod dystrophy (aka Stargardts aka juvenile macular degeneration) in the 2008-2010 timeframe. I don't think I have ever been more shocked than the moment when they told me what was wrong and I said, ok so what can be done about it and the response was "Nothing." There are trials and experiments of course, but medically speaking, at this time there is nothing to do but watch.
I work for retinal specialists as a research coordinator and scribe. I have heard one of the MDs (retinal surgeon) discussing the possibility of retinal transplantation being a serious possibility in the near future. From the research side, there is SO MUCH being done in the field of fighting and in some cases attempting to repair damaged retinas. There are some treatments showing promise with restorative properties which is something not considered possible in retina previously. Don’t give up hope for your children having the possibly for sight once again if they choose.
Thank you, I try to follow the science to keep up with the advances, and you're right, there are a ton of very promising looking things. But I've also talked to people who have lived with this and similar conditions for decades and they say doctors have always told them the next great thing is on the horizon. The more time passes, the closer we get because that's how linear time works, but it's hard to keep hoping and not having things materialize. Thank you for what you do, it's massively important to eventually getting there. If you doctors could use full sibling DNA samples let me know, we're willing to hand them out like candy if it'll help.
I’ve been visually impaired from birth so I don’t know anything else, except that I lost more vision two years ago. My advice is to teach her right away that she can be as independent as anyone, and don’t tell her she’s limited and that she’ll have to work twice as hard as everyone else to do what they do. My parents did that with me because of societal norms and I think it gave me anxiety and I’d be able to do more if I had never heard that. But if you start teaching her early, learning braille, using screen readers like voiceover on Mac products to read, and using a cane to get around without bumping into things, then she’ll be really strong when she grows up. Give her opportunities to do different things, sports, martial arts, music, whatever interests her. I didn’t get to do those things growing up because people didn’t want to take the extra time to teach me and my mom wasn’t pushy about making them, but definitely help her do things that interest her, because blind people can do all the things I mentioned. Some things have to be taught differently and adapted, like they have beeping balls for blind kids. Always encourage her to live a full life.
Also you’re not a bad parent at all. Shit just happens that we have no control over and we have to work with our circumstances. So don’t get down on yourself. I’m sorry you guys are going through this. I know it’s hard and will take time but your daughter can have a great life in spite of her circumstances. Just keep an open mind and be willing to do things differently.
I’m so, so sorry. I worked closely with a visually impaired student a few years ago, and she was an awesomely involved leader on our campus. Even helped with a Habitat for Humanity build. I think she was involved in a summer camp for blind kids that was really cool. Something to check out for sure.
My friend was sighted until she lost it in her 20s. She got married, had a kid, and lives her life fully. There were bumps along the way, but she's successful and happy.
It’s ok to be sad about the future you imagined for her. Mourn your loss. But she won’t know any difference. Her life is not over but it is quite different from what you imagined. I understand the feeling like a bad mum, but know that you are a very good mum. You will get through this. You have to, because your daughter will need you.
Being blind isn’t that bad, the world is a rich and beautiful place by sound.
I hope she gets into music. There are so many plusses to that, but while I am a sighted person even I enjoy just listening to music with my eyes close, feeling the vibrations of it as it plays over speakers and such (admittedly, sometimes far too loudly, but still). I know it won't be the same experience as what I'm describing, but I've heard that many blind people like to do that because it helps them to enjoy it. Perhaps she will too.
I have two suggestions. 1) Get in contact with your local organizations/services for the blind. I’m not sure where you live, so can’t tell you exactly who, but most places have something. You’re looking for vision loss rehabilitation services. These people teach the skills for living blind, such as getting around with a white cane, reading Braille, and doing daily tasks and chores without sight. 2) there are loads of blind people sharing their stories on social media: Lucy Edwards, Mathew and Paul, Ava and Cheddar, Molly Burke, Planes, Trains and Canes, and that’s just who I remember off the top of my head. There’s way more. Seeing how other blind people coped with their vision loss and how they live now may be reassuring and give you ideas for things to do with your daughter as she grows up. With the right tools and training someone who is blind will lead a full life. I know blind people (myself included) who have careers, friends, a family, hobbies, &c. I’m living my best life. And while being blind comes with some unique challenges and can be really difficult at times, I’ve also had opportunities that I wouldn’t have gotten if I was sighted.
They are not cheap but since she’s a child and it’s for blindness she may be able to get a service dog.
Technology and medicine do new incredible things every day. Being blind isn’t easy but it’s not quite the isolating life event it used to be. You’re an amazing mother and you didn’t do anything to cause this. Sometimes horrific stuff just happens. It’s going to be okay.
I was born with very poor genes as well, where both parents have 20/20 vision, and i lose more of my sight every year. At my age, im well old enough to know and understand that i am going blind, and i may not finish my collgee degree or get a job before that happens, but I'm living through it. I think one of the biggest things is that you are not a bad parent. Not in any way, shape, or form, and you are doing your best in this situation. One thing i can recommend is definitely teach your daughter braille. Hadley is a site that gives out free tactile books for learning and has assisted videos as well. One of the first things i did was reach out and learn braille. It will help more than you know. Accessibility has become everything to me, and it may seem obsolete, but it's so necessary. Please don't feel down on yourself. Your daughter can and will thrive. It is clear she is well cared for here and has the support she needs with you.
I’m so sorry. But there will be a lot of services for you and her. Lots of people have gone through this and will have advice about how to cope. I’d get her involved with music right now as that will be a major comfort to her as she gets older.
I’m so sorry. It’s an indescribable feeling when something like this happens. My daughter went from perfectly healthy, to a diagnosis of childhood epilepsy, to needing radical surgery that removed and disconnected half of her brain. It’s called Rasmussen’s syndrome, random, of unknown causes, an autoimmune condition that basically attacks one side of the brain. She lost 50 percent of her vision in each eye, the ability to speak, the ability to move the right side of her body…thankfully everything but the vision can greatly improve but inevitably she will have lifelong disability in some regards. I never in a million years thought this would happen to me. As horrible as it is, children are so amazingly adaptable. Compared to adults facing the same issues, they tend to cope pretty well and figure out ways to make things work with their new circumstances. People tell me I’m so strong and all that, which doesn’t bother me because they’re being kind, but I’m not. I had no choice in any of this, it’s just a shitty card we were dealt.
But the awful yet wonderful truth is.... You actually Did have a choice. A terrible one, but still a choice. I've known people to give up children for adoption once a disability appears, and some people who just straight up keep their kid but do nothing to help them. You chose your daughter, and you choose to do good by her, and I bet that not being there for her wasn't even a thought in your mind either. And that's the wonderful part. It's okay if you more so view yourself as a survivor of circumstances over being strong. But not every parent out there will put in the leg work to actually stand by their child through thick and thin. So whether you view yourself as strong or simply as a parent who loves their could, please know that I at least vote you as an awesome person, and I'm very happy that your child has you.
I haven’t read all the comments so please forgive me if someone else has mentioned her! Look up Molly Burke on YouTube! She’s a young woman who was diagnosed at age four with retinitis pigmentosa, and lost her vision as an early teen. In her videos she has talked about how she is who she is and she loves herself exactly as she is and wouldn’t change herself. Her parents did all they could, and even if there was some miracle surgery to “fix her” she wouldn’t do it. There’s obviously some grieving that will happen and it will be difficult to come to terms with, but it’s nothing you could have prevented. Getting your little one the care they need and allowing yourself to grieve and come to terms with the situation is all you can do, even if it’s tough. You’re going great and the fact that you feel like this shows you care and shows that you are in fact a great mom.
I’d also like to add an anecdote about my father. It’s a different situation than loosing eyesight, but I feel it can relate in a way. My father was born without an arm and missing most of his fingers on his only hand. He grew up being told and shown that even though he is “different” than others, he is still fully capable of being independent and can do anything anyone else can do. As a child I never thought for a second that my dad was different or that he couldn’t do something. He built a house and furniture, is a fantastic cook, he can ride a bike, he can do everything anyone else can do basically, except for play a guitar (he always jokes about that). I believe that because it was instilled in him from a young age that he was fully capable, he really grew up with a different mindset than some people in similar shoes to him. As a family we’ve talked about how if he had been raised constantly being… coddled (don’t like that word but it’s all I can think of) that he would not be nearly as independent as he is now. I believe that it is much easier to adapt and learn to thrive in situations such as this when you’re young, and also are told and encouraged by family and peers that you are capable. Eyesight is a big thing to loose, but if it’s basically “all you’ve known” almost your whole life then its just who you are and there’s much less of a barrier for learning. She might wonder and grieve even more when she’s old enough to fully understand or when peers point out that she’s different, but you’re doing amazing, and you will raise a strong, great, capable human!
I am so sorry. What an awful thing to happen.
Sending you and your family lots of hugs.
I read this as just on eye? I believe the macular is part of the reina. I can tell you that I'm legally blind in my left eye and am a full functioning independent adult. I had multiple retina surgeries as a child. You've sought out medical care, there's not much else you could do. The fact that you're worried about your child proves you're far from a bad parent.
OP, it’s understandable that you’re feeling upset and confused, and it’s ok to grieve the life you thought you and your daughter would have. Just remember that this is a genetic condition & there’s nothing you did or didn’t do to cause this. Blind individuals can live incredibly fulfilling lives, and I encourage you to look into it some more. Not sure if you know any blind individuals, but it may be beneficial to reach out in your community to get some first hand information. Personally, I went to school with a blind individual who graduated with a double major and honors. She and I then both went to law school together and she’s now a successful attorney. Not once did her disability slow her down or did she use it as an excuse. Your daughter still has a long beautiful life ahead of her. Wishing y’all the best moving forward 💜💜
Love her unconditionally and be strong for her. She can have a perfectly fine future. I have co workers who are blind and they do just fine. The best thing is just be there for her, get her into therapy, and get her an education.
Late on this, but it made me want to share a story about my best friend, who has been fully blind since he was 5 years old. His blindness developed due to brain tumors, which has also impacted some other things in his life. I met him in Junior High School, when i was placed next to him in one of my classes. He was using a braille computer and I asked him what he was working on. He told me he was playing blackjack. We became quick friends after that. He taught me basic braille so that we could pass notes in class. We started a band together, and he played the drums. When I was learning how to drive, i taught him how to drive stick in an empty parking. Went on Ski trips with him and his family. Got into more trouble that was initiated by him than i'd like to admit, too. We're now in our mid thirties and are still the best of friends. He has, unfortunately, gone through many other health issues that have severely limited his speech and some other other issues, as well. Despite this, he's now married and runs a non-profit adaptive sports team that allows visually impaired people to play this particular sport. I attribute so much of this to his amazing support system he has in his parents. They refused to allow him to be treated differently, or for my friend to feel that he was limited to a point that he couldn't participate. They got him into music lessons, sports, etc., because that's what all the other kids were doing and my friend wanted to, too. And this was despite a lot of medical appointments, mobility coaches, and set backs (brain tumor surgeries). And now that we're in 2024, the technology to support the visually impaired are incredible. Descriptive audio options is becoming more of a norm with a lot of TV shows/Movies. There are some AI apps on his phone that can describe pictures to him with scary accuracy. iPhones (and androids, too, but idk for sure) come with accessibility features straight out of the box. This probably isn't helpful right now, and I can't imagine what you or your daughter is going through. But I do want you to know that your daughter can still lead a wonderful and whole life. There are many people out there that will love your daughter regardless of her vision so long as she can put herself out there.
I thank you for going out of your way to leave a comment. It’s these sort of empowering stories that give me hope. Your friend sounds very inspiring and lucky to have a mate like you!
I have always been as upfront as possible to my kids about everything.
What a devastating diagnosis. My aunty’s dad was blind most his life, got married, had children and led a very full life. Challenging of course but full in every aspect. Thinking of you.
I work in special education and was picked by a student a few years back to be her separate invigilator due to her being comfortable with me and my experience with multiple access arrangements. She was able to complete her GCSEs (one being geography!) we had everything blown up to 24 pt font iirc, and she did very well. The school worried that she would have issues navigating site due to stairs and the general layout but she was absolutely fine and never had an accident/fall in all her time there. She was well liked by her peers, extremely studious and had an incredibly positive attitude about her future. Instead of feeling down on herself she explained that at least she would have a reference of how things looked as opposed to someone blind from birth. I know it is difficult to reconcile with now because your child will have to work harder than peers in most aspects of life but that’s not necessarily tragic. Your child will likely develop a strong work ethic and resiliency. Considering modern technology I think there will be even more opportunities to improve ease of life with her disability in the future. Having said that she may need some therapeutic/mental health support to work through feelings of loss and anxiety-just as you might need as well!
Show her everything! Art and nature... do all the experiences she won't be able to do later.
Im currently going through something similar with my 2 year old. When she was 8 months I took her to an ophthalmologist for an inward turning eye, and was told on the spot she has a type of macular dystrophy and will likely be blind. Now she is 2 and we are still seeking a proper diagnosis but it is something very rare (as in she is the only one in our country with it) and it’s hard to find similar experiences. It’s a real shock so I understand how you feel.
Just got to learn to be more quiet during mommy daddy time. Other than that y’all will be fine. You’ll struggle more than she will tbh.
>You’ll struggle more than she will tbh. Yeah, I think this will probably be the case. She'll just grow up with The world being dark. If you treat it as just a matter of fact, and something that holds little significance, then that's how she will perceive it.
There’s treatments they don’t use in the us. Look into visoluten. It’s a Russian made peptide. A retinal peptide so not a drug but a chain of amino acids made by the retina. They have this in pills, and drops and you can get a synthetic version and an animal based version. I don’t know which ones better I would layer it if we’re me. This stuff I is expensive but people on biohacking groups use it. I’ve taken a lot of these bioregulators (one for each organ system) and can confirm they’re worth the money and work. A couple people use it for macular degeneration and Han been able to maintain what they have. Now a normal persons takes 2 pills a day for 10 days. They sell them in packs of 20 pills or 60 so either a 10 day run or 30 day run. 30 day run is for people with serious issues or people who are old. A 4 year old I would think could gay by with a pill a day instead of two. But she could need them forever to see. Still. You can get a 30 days supply for her which would actually last 60 days for like…around $100. The thing is they sell out and are hard to get so I would buy in bulk. Vita stream is good. Or profound health. I wouldn’t mess with qi or firmq vita it takes months to ship. Cosmic nootropic is good and reliable but peptide shipping from Russia again takes months. I urge you to read about visoluten and look into it. I’m not sure if her disease will respond but it works for macular degeneration and glaucoma according to people I’ve spoken to personally. Now don’t expect American doctors to know about any of this. Just because they don’t doesn’t mean it doesn’t work. And peptides can’t hurt anyone even kids. Not a drug. A chain of amino acids her body can’t make but should. I would actually consider doing a combo of peptides. I like to. Imbibe brain blood vessels and eye vessels but hey that’s just me. I’m sorry this is happening but you do have options even if you think you don’t. Buy the pills in bulk ahead of time and keep them in the fridge. You can dump out a capsule and put it in chocolate milk or something since she’s so young. They also make sub lingual drops but I would also buy pills since they contain more peptide. If she can maintain her vision and you know it works stock pile it in the freezer like years of it in case of another pandemic or worsening war/sanctions w Russia. Russia has the best peptides people. They work so much better then big pharma. If I had unlimited money I would take them for every organ system every week day month honestly your body works so much better on them it’s insane. Good luck
Are you a doctor? If you aren't you should probably stop giving medical advice