When we were first told "your son has Ocular Albinism" I was relieved that it was only in his eyes. Yes, he does have fair skin and fair hair, but it can and probably will get slightly darker, and he will not stand out as much as he would if he had complete Albinism. The first few times someone asked "so it's a form of albinism?" or "so he has albinism" I would correct them with "ONLY in his eyes" because the last thing I wanted was for people to start calling my son an Albino, to me that was such a disrespectful term used to classify and single out people with albinism. I have heard to many times the stories of teasing and bullying because someone was considered weird or an outsider because of their albinism, and I just wanted Liam to be protected from that. (Please understand I am not that judgmental and cruel but so many people are and this is my baby we are talking about...and I am definitely a protective mama bear! I want him to be treated as an equal by his peers not as a "weirdo" or "an outsider".) So, needless to say, I was very hesitant to join NOAH (the National Organization for Albinism and Hypopigmentation) as a member because I feared people would hear this and just jump to a conclusion of "he's an albino" and that was all, and Liam is so much more than that. AGAIN... Please don't misunderstand, I do not have anything against people with albinism but I know and see daily how the world views them and how mean people can be and I guess at first I just really wanted my child to "blend in". But then I came to my senses and realized something, people are cruel, they will assume what they want no matter what and all people no matter how different are beautifully created by God in his own image so who was I to protect Liam from who God made him to be? And who wants to just "blend in" anyway??
My thoughts remain the same on the term "albino"; I believe you should always put the person first not the condition. A person is not summed up by their condition; they are a unique person who happens to have a condition that was not by their choosing so forever I will correct anyone I hear call anyone with any form of albinism an "albino". IT IS NOT ALBINO!! They are people with albinism or a person with albinism, put the person first above all else, not the condition.
Now, that being said, I finally broke down and joined NOAH, and it turns out they have a lot of information that they freely send to parents, with welcome baskets, magazines, informational conferences and brochures year-round. They have people who have been where we are now (the first years of discovering the condition in their own child) and are free day and night to chat with us and lift us up with encouragement along the way. They are an amazing network full of amazing people with tons of advice and stories to share. It was an eye opener.
So, whether your child has a form of albinism, like Ocular Albinism, or has oculocutaneous albinism (complete head to toe albinism affecting the eyes, hair, and skin), the NOAH organization is there for you to help you in whatever phase of the journey you and your family are in. I hope that one day, years down the road; we can be an "on call" family for new families affected by the disease to share our story of hope and support with others. I have attached their link on the left tool bar on this blog and I hope some of you will check it out, even if you don't have a child or know anyone with albinism, it is a great learning site full of wonderful stories and knowledge to broaden your world view and you never know in the future who you will meet or what you will go through. I know I, for one, never thought when I looked at children with albinism that I would ever have a child with the disorder but being on the other side of that fence I can tell you I wouldn't change a single thing.