My boys were 10 and 5 when my vision loss occurred. It makes things harder, but life goes on and you and they will adjust. My boys are so considerate of my vision loss and help look out for me.

We foster parented a few little ones (age 2 and below) and but it does make some things harder. Those little onesies with the legs that snap together are the worst when you can barely see what you're doing. And I always had to turn on the lights to do anything when pre-vision loss, I could have changed them in the dark. But a lot of it is motor memory.

My first and immediate suggestion is to see a low vision specialist. There are many products and technologies to help you along the way. And in retrospect, I should have went for mental health therapy too. Vision loss, even gradual, is a traumatic experience. Talking to someone might help ease your anxiety.

Both of my parents are totally blind and they have been since before my birth. I can attest, as the child of VI parents, everything will work out okay in the end.
The biggest "missing" piece of my childhood was a car but my parents still went out and we walked, or used public transportation. There were many taxi rides with trunks full of groceries. That taught me a lot about how to move around the city safely and independently which are skills I highly value.
My mom has never seen my face but she stills sees me through touch, smell, sound, etc.
She read braille children's books to us and we absolutely loved it. She'd also play audiobooks for us all to listen to while we did house chores.
After my sister and I left the nest, she went on to get her Bachelor's degree in special education and her Master's degree. She now works for the state.
There will be challenges - but as long as you continue to advocate strongly for yourself and your kids, it will be okay! The biggest thing my mom taught me was, "never give up! there's always a solution to the problem."


I know that doesn't fully address your situation and what you personally are going through but I wanted to share from the other side of it -- your kids will grow up well as you continue to give them all the love and encouragement that you always have

I have what the doctors call a "textbook" case of Stargardts disease. So welcome to the elite club. Good news is the disease is usually very slow to progress. So you adjust as you go. I am legally blind now but i was nearly 50 years old before it got that bad for me. Hopefully you will have many years of semi useable vision before lt is too limiting. Also it is unlikely that you ever go totally blind, and since your peripheral vision remains mostly intact you will likely not need to use a cane to walk.

The bad news is central vision is detail vision, doing things like reading letters and numbers will become increasingly difficult as the condition progresses. Strong reading glasses help but can do only so much. I also use a 6x telescope to see distance. This is invaluable to me but also had limitations. The worst part for me was having to give up driving. With any luck you will have a kid with a driver's license by the time you get there.

Sorry to hear you're going through this. I have no idea if my experience helps at all, but;
I have LHON, which isn't Stargard's, but it does also result in loss of central vision, for what that's worth. When I first went to a blind rehabiliation school about 6-7 years ago, I felt really depressed and hopeless. The thing that helped me get out of that mindset and properly align my own expectations of my abilities, was meeting many of the instructors and administrators there. I knew several of the teachers there had Stargard's and even the leader of the center had Stargard's and had gone back to get their masters while supporting a family.
Again, I don't know if that's helpful or not, but without being too involved in the blind community at the time I first lost my sight, I didn't know what to expect and how much I really could do. But meeting people who have attained fullfilling careers and were great at their jobs, just like anybody else helped me a lot at the time. Just knowing that there were a lot of people that have gone through the process of losing their vision and went on with their careers and families helped me out a lot.
But it did take a lot of training and still does, so definitely see if you can get in contact with your state's department of rehab or similar service if they offer it, to best facilitate getting the training and equipment necessary.

My child was 3 when my vision loss started to impact daily life. I have cone rod dystrophy so, like with stargardts my central vision is going.

Reading with your kids:
I could not read books to him so I downloaded book reading apps for kids. I gave my kid his own tablet at 4 and he loved finding books that we would read together before bedtime. The great thing about those apps is that they highlight each word as it speaks it aloud so he was reading much earlier than I think he would have had I not had vision loss.

Transportation:
Public transportation is awful where we live but Uber and Lyft are options. However, the most important change that we made was making sure to live within 2 miles of schools and grocery stores. I definitely get my steps in! Each mile takes about 20 minutes. The farthest we walked to and from a school was 1.7 miles so about 45 minutes each way. It seems like a lot, and some days it is. However, I get to spend so much more quality time with my kid. When he was in elementary we would play word games (go through the alphabet and come up with as many words as possible that start with each letter. Make it harder by choosing a specific topic like animals, verbs, clothing). He is in middle school now and we talk about everything plus he has a much better understanding of traffic flow that only prepared him more for driving.

Seeing your kids' face:

This is a tough one and has brought me to tears many times. However ... I was honest with my kid and told him that one day my eyes wouldn't let me see him. As he gets older, he changed everyday and even though I can't really see his face, I can always pick him out of the swarm of kids coming out of the school or at his extra curriculars. I find that as fixated as I once was on "not" being able to "watch" him grow up, I haven't really missed anything. In fact my vision loss has created so many more bonding moments that I think would have been missed otherwise.

Other tips:

Make it a priority to go to a therapist on a regular basis. Being a parent is difficult on its own. Dealing with ongoing loss creates a whole other level of difficulty. Being able to talk to a professional is so important for this journey. I thought for the longest time I just needed to figure it out on my own. But, even though I have a great support system with my husband and family, the emotions that arise get unbearable. I almost destroyed my relationships because I had no idea how unhealthily I was "coping" with those emotions. A month after I made myself find time and money for therapy, my life became so much more manageable.

Enjoy the small things:

No doctor or scientist has found an accurate timeline of how much "vision time" we have left. I have researched and asked worldwide for this prediction. But vision loss is not a death sentence. There are so many ways to experience the life we have than with only our eyes. My kid and I love cooking and baking together (his job has always been measuring the ingredients ... Even when he was 4). We hike together and he makes sure I don't trip on branches and is amazingly good at communicating how steep an incline is.

One last piece of advice with school:

Communicate to the principal and your children's teachers that you have severe vision problems. Let them know that reading and checking their work is an impossible task for you. Give them the best way to reach you if they notice that your kids are struggling so that you can work together to find solutions. I have only had one teacher that did not understand how my inability to see my child's work created a disadvantage for my kid. That is how I learned to involve the principal as well. We have to be advocates for our kids and ourselves.

I hope this helps ... Feel free to reach out 💜

Definitely see a low vision specialist and see what tools they recommend. There are some magnifiers that can help with the reading. They may also recommended filters on your glasses, as people with Stargardt's disease may have light sensitive eyes.

I am so sorry you are going through this. I also got diagnosed with Stargardt's a little over a year ago. Although my child is 10 now, it's still sad to think about all of the things I will miss visually seeing in her life, like being able to see her participate in sports, seeing her at choir / orchestra concerts clearly, etc... BUT- I will be there for her every step of they way and show up, even if I can't see her. Videos and pictures are great for these scenarios so I can see her up-close, and have those memories stored.

Audiobooks are great for when reading becomes too difficult for you. A lot of libraries now have audiobooks that you can rent from as well.

I agree with what u/B-dub31 has said. Although I have not taken those steps yet, I know that soon I will need to start seeing a low vision specialist and seek therapy for this dramatic change. Also, seek support from your loved ones. They will be there for you to carry you through this difficult journey.

Just know that life will go on, and you will learn how to live your life in a different way, but it will be okay. School is still possible. Working is still possible. Don't limit yourself based off of your diagnosis. Overcoming this obstacle will make you stronger than you think.

Feel free to reach out if you want to talk.

I don’t have a child myself and I am totally blind and have a totally different eye disease then you do.

However, I just want to say life does not end and you don’t really need to throw in the towel and give up just because you’re blind. I have been totally blind most of my life, no vision for just light perception and that’s about it, and before. Well not much vision to speak of honestly.

I am in my late 20s will be 30 this year.


Is school possible?


Yes, I have two associates in English and political science, and now decided to go back to school for stem major, compsci.

I’ve done a lot of advocacy work, and representing, teaching people how blindness works and about the tools that we as blind people use.

I have traveled by myself once in 6 different states across the country. All alone without much assistance, and I also did a lot.



Raising children is possible. Going to school later is also possible. And other things are too! Don’t give up!!!!! Keep living life. Doing your hobbies and interests are possible. You don’t change because your vision has. You don’t become a different person. And things sometimes just need to be adapted, even if you somehow later had no vision like myself.

I became legally blind at age 9 due to Stargardts & I'm now in my 40s. I had mostly 20/200 vision until my 30s. From what I've read, vision loss occurs slowly but learning to adapt will help you thrive. Research also suggests limiting your Vitamin A intake & sun exposure to help slow the progression. There is also a lady from the UK that I know has a support group & also received a diagnosis similar to yours. It's definitely an emotional journey but support will get you through it.