NOAH AOC

Hello,

My name is Dorothea and I live in Ohio. My daughter Bethany who is 6months old has OA. I am not sure how to help but I will try. Bethany wears sunglasses out side for now. When we do go out but it is winter here so we don't go out much. I know in June she will be going back to the eye doc to see about glass to help her see better and he already said she will have the transitional glass to help with the light in her eyes. So maybe you can see if your doc has any glass that might help with the sunand glare in his eyes.

For the questions I get alot of differnt ones.....Is she blind? ...Can she see anything?... Why do her eyes move so much?.... Poor thing is there anything you can do to help her?...I get those alot I try to answer as much as I can be it gets to be alot whenever I can't make it trought the store with out 50questions. Just answer as much as you can. The rest come up with an answer that makes you happy. I reply alot "an angel had a differnet idea for her" and I go on my way.

I hope I help alittle! I bet your little boy is beautiful.

I am also going to Las Vegas, maybe we can met.

Dorothea

Thany uoi so much!! And YES you help me out a lot... i do hope we can met up in Vegas...i just so glad that i am not in this alone

You are welcome! Please don't ever feel like you are in this alone I will listen anytime you need to talk.

How is Dillon doing? When was he born? Bethany was born on July 30th. My oldest Karmella just turned 5 today!! Happy day and sad. My baby is getting big to fast. Do you have any other childern?

Hope to hear from you.

Dorothea

hi. my name is crystal. i'm an african american with albinism. i would like to put you in touch with my mom, if that's ok. she did an excellent job raising me; if i do say so myself :)  she will be more than happy to answer any questions you have.i am the only one in my family with the condition. i know first hand that there are some differences in the african-american community when you have this condition. i'm one of the lucky ones who managed not to have it too bad. i think a lot of that has to do with the way i was raised. my mom didn't treat me any differently because of my condition. it was never even brought up.

anyway, give the little one a kiss for me. i think he's going to surprise you and have a stronger character and sence of self than you ever could've imagined.

take care

michelleatl@hotmail.com

here's my  mom's e-mail. you can go ahead and write her directly if you wish

boatwor@boe.richmond.k12.ga.us

I am also a mother of a child with Albinism. I am black and my husband is from Nigeria. Ezi is now 14 months. Did you go to the Las Vegas Convention? The doctor told us that Ezi had albinism at birth. I noticed her light hair, but I didn't notice her skin until more than a week later. Strange, but true.

 I got a lot of questions about her eyes moving, but mostly people just say how beautiful she is. When we go out some stare and point. I don't treat her differently. She didn't start focusing on faces until 6 months. Now she looks at everything.

 She loves books. And she is quite a chatterbox. She says "Ham" when I read "Green Eggs and Ham" by Dr. Suess. She also says "ish" when I read "One Fish to Fish." In all she says more than 10 words. I think she is amazingly sharp. We visited a friend's house who had a aquarium and immediately she said "ish" even though that was her first time seeing live fish.

Few people are prepared for children with Albinism. It's such a rare condition. But everyday I thank God for Ezi. She is a blessing to me. I know that I cannot prepare her for all the challenges of being different; the best I can do is let her know how much I love her every opportunity I get.