I think you just being supportive and a listening ear for him will be amazing. It's hard in situations like this to feel like you're really helping your loved one because there's not much you can do; sadly the condition is going to progress no matter what. But you being there for him, to talk about it or not talk about it, is going to be such a big help.

I think another thing you can do is let him know that just because he is losing his vision does not mean he is losing his happiness, or the things he loves in life. He can still lead a very happy, independent, awesome life. It will be a tough adjustment, and he'll have to learn how to do things a bit differently than he did with sight, but it is all possible.

Do you know if his parents have been given resources about their local division of services for the blind? Your cousin should start receiving services from a teacher for students with visual impairments (which is what I am studying to be) who will help him learn methods that will allow him to be successful in school as his visual impairment progresses. They will also have resources for your cousin and his parents to use for support from other families and kids who are affected by vision loss.

Hopefully this is helpful--please let me know if you have any specific questions and I will try my best to answer! The fact that you are reaching out for advice on how to support him already shows that you are an amazing cousin. I'm glad he has you.

Yes!

One of the most important things for the whole family is to meet some successful, happy blind people. He needs role models, his parents need to set high expectations.

He can finish college, get married, have a great career in lots of fields. He can live independently, travel, shop, etc. and overall lead a normal life.

You're a good person for reaching out to this community for advice. I'm sort of going through this with my 10 year old son, who has got some bad news about his vision earlier this week, but for which we do not yet have a clear diagnosis. I'm a bit of a wreck, but this sub reddit has given me much hope for a fulfilling life for my boy no matter what vision issues lie ahead for him.

I would personally tell him as soon as possible, though I understand that's maybe not what you're here for. The reason I say that is because I'm sure your family wants him to be able to do all the things he can now, and as soon as he starts learning non-visual skills the better. If you know you're losing your sight, you can put effort into learning to do things without vision, for example for a child this could be making a drink, starting cane training etc. It will make the transition to blindness 100 times easier.

I also echo what others have said about ensuring he has positive blind role models. This will make a huge difference to both his life and the lives of the rest of the family.
Introduce him to the idea that blindness is not awful, it's not going to take his life away and it won't stop him doing the things he wants. He can still play sports, study stem fields, travel.

Yes, finding out he's blind will probably be hard on him but with encouragement and most of all the skills to keep doing what he already does I think you'll see just how resilient most kids are.

Thanks for being there for your cousin.


When the time is right, introduce him to $1. Tommy is an incredibly warm, intelligent, funny guy who happens to have been blind since birth. He has a wonderful series of videos where he shares what it's like to be blind in various normal, everyday situations.


In one of the more recent pieces he visits $1. Pay attention to how his tour guide, Jackie Cannata, behaves. She sets a great example of how to engage and interact with a blind person.

What is his rare condition? You mentioned in another post he is really into science, well, many of the treatments for these condition are on the leading edge of science research like gene therapy. You could look into the latest science research with regard to his condition and he might be interested to learn.

The only issue might be that they are still far away from these treatments actually being used, so it might get his hopes up.