Penpal for my daughter with Stickler's Syndrome?

Question

My daughter has Stickler's Syndrome, and has lost sight in her left eye due to recurring retinal detachment.
She said today that she feels like the only girl in the world who is blind in one eye. I'd like some other girls and women (no matter what age) who deal with some form of blindness to e-mail my daughter. She's seven, so someone that age would be great too. I'm in an area without a support group for this kind of thing. She loves ballet, reading, kittens, and horses - a typical 7 year old girl. Except that she's so extraordinary I hate to call her 'typical'.

Answer 1

Hello. My name is Patti. I saw your question and I am so happy to have the chance to try to answer it. First, I am a single parent. I am 36 but would be happy to try and support you anyway that I can. I am totally blind due to retinopathy of prematurity. I was born premature by three months and because of to much oxygen that is how I lost my sight. Next, there are wonderful support agencies for the blind. I am sure you probably have had a ton of messages givving sites to you so sorry for repeats. The first is www.acb.org this is a wonderful group made up of blind people and there families. www.nfb.org is the same type of organization. You may want to try and contact The National Center on Rare Disorders. When I was diagnosed with erythema nodosum they were very helpful to me. Also, a fun thing to do that I absolutely love to do is watch discriptive videos. They are movies which have audio closed captioning that is how I discribe itanyway. They take movies like 101 Dalmations and tell you what is going on what the characters are whearing etc. The site is www.dvs.org I hope that I have that site correct. Also you may want to try the National Library for the Blind and Physically handicaped great resource for kids books and magazines.
My email is [e-mail]
Hope this helps

Answer 2

even as i became youngster, I had a ton of penpals -- as a lot as 40 at one time! i imagine that became an staggering help in gaining comprehend-how of a thanks to write down and manage my ideas, and so on. I keep in mind even getting penpals from the U.S. for all my classmates contained in the 80s... What a astounding thanks to open one's ideas to something of the international! on the instantaneous, no one writes letters anymore, fairly not the more youthful era. even even though it became interesting to acquire a letter contained in the mail - a letter that had traveled aroundt the international! - the internet has made communication a lot a lot less complicated and effectual. through multitude of opportunities on line, i'd recommend you first narrow down what your daughter is searching for. you may want to in all likelihood stumble on a penpal in any u . s . a ., in almost any language. locate out what area of the international piques her curiousity, and what type of pursuits the different penpal must have. would sound insignificant, yet in case you want the written relationship to very last, it really is paramount. apart from that, i'm sorry that i can't furnish a particular information superhighway website.

Answer 3

i know a friend who has the same thing. but shes too much of an @ss to bother emailing peopl =\ sorry. but im sure there must be other people? or an organizaion you can relate with and join. good luck :D