NOAH AOC

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...

Hey, everbody! I have an appointment for Jathan with his new PO on August 9th. Does anybody have any suggestions on what questions I shoud ask or what I should look for? The first PO that I went to was horrible and left me crying for weeks. He was so negative and didn't answer any of the questions...

I have recently noticed that Jathan has a constant sweeping motion with his eyes from one side to the other (very frightening for a parent to see). I am assuming that this is the beginning of his Nystagmus. Is this correct? Also, for those of you that have experienced your children doing this, at what...

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 [...]

Has anybody else been told that their child is missing the macula? but that it might develop later? I am confused by this entire concept. Any information would be very helpful. Thanks....