NOAH AOC

Hey everyone! I'm a sophomore in high school and I'm taking health this year. We have a term paper and oral presentation to do, and I am doing mine on albinism. Now, I know there's plently of great information on here about albinism, but I find it a little more interesting hearing from people...

I post a lot of videos of Lyra. I do this not just to entertain, but also to support my overall purpose of starting this site. I’m not sure if they really HELP other parents of children with albinism.?? I hope that for NEW parents of a child with albinism, watching these videos gives [...]

Over the last couple of weeks I’ve been borrowing a friend’s Sony Digital SLR camera. It’s AMAZING how easy it is to take good pictures when you have a good camera. It’s been so much fun! I’ve been taking pictures like crazy. Lyra really knows how to ham it up for the camera...

Lyra had an appointment with her pediatric ophthalmologist this month, a check-up that was originally scheduled for the end of September. Several weeks ago, we lost one of the lenses from Lyra’s glasses. After over a week of searching, I gave up. We knew we had to get her a new pair. I didn’t...

Albinism Information NOAH (The National Organization for Albinism and Hypopigmentation)- An organization where people with albinism, their families and those that work with them can get information, ask questions and share their experiences. Albinism International- An online support community for people...

Hi Liz, My name is Lee and I have oculocutaneous albinism (skin, hair and eyes). Your emotions are normal right now. Despite the nystagmus, she can see you and in her own way is focusing. As she grows, she will learn to control the nystagmus. It is not something that is taught, it is something that happens...

Hello there, I am researching Albinism and I'm curious to learn about the current largest albino family in the world. I have found the Guiness World Record entries about the Sesler and the Gaulin kids. But surely there's other numerous albino siblings around right?! Ive read around the forum...

This was an idea I got from Lyra’s TVI. I took pictures of a variety of toys and objects that Lyra was familiar with or played with regularly. To make them more durable, I taped them to poster board a cut them out. Then I put them into the plastic sleeves of some old photo [...]

These are some of the milestones Lyra met over this past year. They are not in any particular order. There have been so many! I don’t want to forget them. These are all I could remember. I’ll add more as I think of them. pulls string [...]

I added Jacob and Frankie to the slide show. It is almost to the end of that second song now. If I add anymore new pics, I suppose I'm going to have to start taking out some of the ones of Lyra. I do have like 3 times as many of her as I do any other child...so I guess that would be the right thing...