Tuesday, October 2, 2007

Albinism

For some odd reason tonight I found myself searching for information on Albinism. For those of you who don't know, Adyson was diagnosed with Albinism at about 4 months old. I used to search the websites and blogs nightly trying to soak in all the information I could. It became a bit of an obsession for me, and somehow, I just stopped looking. I guess her "condition" became normal for us and she just seems like such a normal kid, it's very hard to remember that she has anything wrong with her. Anyways, I have been reading the forums and blogs of parents who have just discovered this about their children, and thought I should write down Adyson's story. Maybe someone who is going through all of this will read it and realize that it isn't the end of the world, or even close, thought it may feel like that for a bit-and it just feels like something I should do so I don't forget!

Adyson was born with the most beautiful blonde hair have ever seen. Thick, shiny blonde hair. We didn't think much of this because I had some blonde hair of my own when I was younger. She was a beauty though! She developed very normally-in fact, I would say she was above normal. (I only add that in because I read tonight that a lot of kids diagnosed with OAC don't respond a lot to toys in thier first few months) Adyson did though. She loved to look at books, and she loved toys, and she would coo constantly. (I may be bragging a bit now) but she really was lovely! We always laughed at her because she wanted to look at so many things at once. Our whole family commented on how much she loved to look around all the time. We all thought it was so cute. I never dreamed that it meant that something could be wrong.

When she was four months old we took her to our pediatrician for her check-up. He immediately asked us about her eyes and the way she looked around. How stupid I felt that we didn't realize that something was wrong? He said she had bilateral nystagmus-and he actually said that something could be wrong with her brain. A very terrifying thing to hear of course! But for some reason, we both knew that her brain was functioning just fine. I already said, we thought she was brilliant! I went home and did a lot of research on the internet and found out as much as I could about nystagmus. It very often popped up when referring to Albinism and I wondered if that could be what Adyson had. I didn't know any of the genetics of it, and wasn't sure if it was even possible. I also found other options, but they were much scarier, and the wait to meet a Doctor in Salt Lake was far too long.


Finally, we headed to the Doctor. That day was a long day. As I'm typing this I'm having a hard time remembering every place we went and the titles of the Doctors, so forgive me, but I remember we left very early in the morning and met with a woman first. She checked Adyson's eyes and was amazed at how alert she was, but then she sort of "passed the buck" and sent us somewhere else. I believe he was an opthomologist. He basically just said exactly what I knew. He thought she had OAC, but there was a test to be sure. It was a strange feeling hearing it out loud. I really KNEW somehow that this would be what she had, and honestly I tried to convince myself that it wasn't a big deal, but it was a lot to swallow. We were lucky enough to be at the U and someone who worked there is a huge specialist on Albinism. He has written many articles and traveled all over studying the effects of it. There he did the test, which consisted of hooking some electrical thing up to Adyson and reading waves. A "normal" persons waves would be a certain pattern, and Adyson's were polor opposite. So that confirmed it.

They also sent us to a genetics lab where they asked us first if we were related-nice eh? (we aren't :)) and there they gave us a statistics. The most interesting thing I learned was that it is pretty rare to carry the gene for albinsim, but for Adyson to have it, means that Travis and I both are carriers. People with OAC have little or no pigment in their eyes. Many are legally blind and most have very poor eyesight.

Here are some facts:

1 in 17,000 people are diagnosed with Albinism.

There are about 18,000 people diagnosed in the U.S.

Most have normal parents and no family history of Albinism

After the long day at the hospital, we came home exhausted. We hadn't really talked about how we felt about this and almost felt selfish for feeling bad about it. So what? Ady had albinism. She was physically healthy, and there are deffinetly worse things out there. They checked her eyes and they were actually really good considering her nystagmus. We just had to be careful in the sun and watch her progression. But for some reason, for a day or two it felt much worse than that. All I could picture was my poor Adyson getting teased for the way she looked. I have seen the teasing and I know I have done the teasing. How in the world can we watch our little girl go through this? Would she be legally blind? Would she be able to drive? We just sat and wondered how hard her life would be.

When I think back on it all, I picture myself sobbing and worrying constantly. It seems very silly now. Adyson is just normal. Very normal. She is smart, her eyesight seems to be doing okay. I'm sure she will need glasses soon, but her eye doctor doesn't think her sight will ever get as bad as some. She is beautiful, and I think her gorgeous blonde hair and porcelin skin is a blessing, and just makes her look like an angel. She has OAC1 which means she has some pigment in her hair and skin, I think it is just enough to give her strawberry hair and rosy cheeks, lucky kid huh?Ady has been tracked by the up to 3 program and they have been really impressed with her sight. We have been really lucky there! She will continue to be tracked through school in case she has any special needs. We are lucky that they will help if she ever needs any sight learning tools!
Anyways tonight I read on those forums of so many parents who are just beginning the "wondering" stage of it all, and while I still worry at times, about the teasing, and the sun, and of course, the eyes-it is just normal for us. Adyson is who she is, and I wouldn't change a thing about her. We are just going to have to raise her to be strong and outspoken and she will just have to be herself for people to see how normal she really is.

Forgive me for babbling-I just felt like I needed to write this down! I wanted to do a regular post today, but my camera isn't working, so I will try tomorrow!

11 comments:

Trisha said...

This is such a cool story. I never knew the details and I just have to add how much I love this little girl! How lucky are you to be her parents!

Heather Wolfley said...

Thanks for writing all that down, Hayley! It reminded me how worried we were about little Ady back then, and it sure does seem silly now. If we ever even think about it, her albinism just seems like one more think that makes her extra special.

Nate & Sarah Schwartz Family said...

Hayley, I never knew the details & never asked since it seemed like such an non-issue. Thanks for posting though. Oh, I'm home now & family is gone. We should talk.

Dirk, Hanne, Alexia, Rayden, ? said...

Ady is such an awesome little girl I don't think she will get teased to bad. Plus she is so pretty! I don't Lexi would do without her around.

Mashawna Thompson said...

Thank you for sharing your story.

Susan said...

It was nice to read you story. My son, 22 months, has albinism and i could relate to all you said!
I started a blog just last month. http://albinism-susan.blogspot.com/
I love connecting with others related to albinism.

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Anonymous said...

Reading your story was like re-living our own story right down to the fine details, you cannot imagine how similar it is! Our 2 year old daughter Tabitha also has OCA1 and has the same gorgeous blonde hair and porcelain skin. Her eyesight is great considering the nystagmus (she had surgery to correct her null point head tilt about 10 months ago) and she has always been ahead both developmentally and intellectually. Actually our eye doctor in Australia said he had seen evidence of higher IQ's in the albinism population, and just quietly my husband and I have to agree! Thanks for sharing your story, Kirsty.