Growing up with Stargardt's -- Intro

I once read somewhere that people who were strucken by Stargardt's at a younger age have a better chance of living a "normal" productive and healthy life than those that were affected after they have reached their 20's.

I think it is true, mainly because you grow up not knowing what is "normal". As a kid growing up with Stargardt's, you are just different. But as a young adult who just foudn out the've got this rare disease, it may be too overwhelming to deal with. Perhaps like all things in life, time can help you adjust, but in many cases, people are not willing to let go of their past and face the reality, as a result they give up on their living a healthy productive life.

But believe me when I say, growing up with Stargardt's is no easy thing. Many parents when they first find out their child has Stargardt's, worry about how their child is going to go through school. In reality, school should be the least of your concern. I know, I was lucky enough to grow up in Canada where there are numerous support for visually impaired persons. There are government programs to help subsidize the equipment you may need, talking books and braile libraries, enlarged textbooks to borrow, and counselling and support for getting through it all. Regardless of where you live, even if it's a place that does not have all the support that Canada offers, I can still say almost for certain, school is not the main problem for your child growing up.

Well if School's not the main issue than what is?
Kids, that will be your #1 concern. Remeber back when you were a kid, there are always the "in" group and the "out" group, there is always a school yard bully, well all of that combined with a kid's inability to tolerate and be compassionate / understanding of differences WILL be everything your child needs to go through. And the best part is, there is probably NOTHING you can do about it.

Kids, because they are so innocent, they can be very cruel. Most kids do not understand what it means to treat others as they would like to be treated. To them, they don't see how they can hurt others, they just find thigns to be entertaining or fun to make fun of differences. Whether it's race, gender, or in this case disability, kids are intolerant of differences.

Of course not all kids are like that. There are still rare angels that would go out of their way to help others in need. They are willing to take a moment to delay their work just so they can help you get started.

All in all, its going to be a rough road for your child to grow up, to see the true nature of human beings and face the harsh realities of the world at such a young age. As for you parents out their, its not going to be easy either, to watch your kid upset and frustrated but there is nothing you can do. To accept that there are somethings that we cannot change nor make it better.