If you ask a pregnant woman what she wants to have, you will almost always get the same answer – “A healthy baby.”

We all fear the worst and hope for the best. We do the best we can to be healthy and eat and drink all the things that are good for our baby. We live for nine months with the slight fear in the back of our minds, the stories of babies who have one condition or another that can be caused by the mother doing something during pregnancy.

My husband is Chinese and I am Caucasian. During my pregnancy, we dreamed of our baby. A little boy with light Asian features.  No doubt he would have black hair and dark brown eyes.

Try to imagine our surprise when the big day came, we went to the hospital to have our baby and when he came out the doctors and nurses started calling him a rock star and saying he looked like Billy Idol. WHAT?  

We had a white baby. Head to toe. His hair, eye brows and eye lashes were white. His eyes were blue. We loved him and held him and took proud new parents first photos, and wondered in the back of our minds, “Why is he white?”

Within hours we were meeting with a geneticist who told us she believed our son had albinism.  

Neither of our families have any history of albinism as far back as we can track. Yet here was this beautiful white baby. We were told his eyes were not like ours and his vision would not be good. We were told he needed to be protected from the sun at all times because the number one cause of death in people with albinism is skin cancer.

My husband went home that night and, after staying up all night the night before waiting for our son to arrive, he stayed up all night again, researching albinism. He quickly learned many people with albinism are legally blind, that most will never drive and socially life could be very hard for a person with albinism.

The next day our geneticist told us that she had spoken to an opthamologist who we should see when our son is 3 months old. An opthamologist could officially diagnose albinism by looking at the back of the eye. I hoped for 3 months what I knew in my heart was true would not be true.  We made the appointment and started researching albinism.  

At the appointment we got the news that we knew was coming – Transillumination defect is complete” are the words the doctor said.  The words that brought tears to my eyes and still do when I think about that day. Based on our research, we knew that meant that our son has albinism.  

We went home and I joined NOAH (National Organization for Albinism and Hypopigmentation).  We had found this organization during our research of albinism and they were a great source of information for us.

We attended our first NOAH Mini Conference in Scranton, Pa. when our son was only 6 months old. We learned so much that weekend. We met other families with small children who have albinism, older children, teens and adults who all have albinism. They opened their arms and welcomed us into our new family. A place where our son is not the only kid in the room with white hair and poor vision. A place where we can ask our questions and get honest answers.  A place where people truly understand and what to help in any way they can.

Since that first mini conference, we have attended a national conference (held every other year) and another mini conference.  I have worked with another member in NYC to revive the NOAH NYC Metro chapter and we have been hosting events locally to promote and continue that sense of community that we always have at our conferences.

NOAH means that our son has friends who are his age, who go through what he goes through and always will have them. It also means we have friends who know what we are going through and always will have them.  It means knowing what to ask, what to do to best help him learn, to be in a streamlined classroom and all the other little things we need to know to do what’s best for our son. Just like all parents want to do.  We have learned all the things he can do.  We have met people with albinism who are teachers, engineers, nurses, law students, college athletes, musicians and so much more. We used to think about his future in terms of what he couldn’t do. Now we think more about how to help him do what he wants to do.

Our son is now in preschool in Livingston. You may see him in the mall, at a restaurant or at one of the many places we frequent around town. If you see us, please don’t be afraid to ask about albinism. I always have a stack of cards with information about Albinism.  f your child asks, “Do you see that boy with white hair” as we recently overheard at a community event, please come and ask us about it!  t’s always a good time to learn something new.

You can learn so much on NOAH’s website at www.albinism.org.

This month our National organization is asking it’s members to host  bowl-a-thon’s across the country to raise awareness and funds for this organization.

This article and the event in East Hanover are part of what I am offering to the organization as a way of giving back to those who have been there in the biggest ways to support my family. We would love for you to come out and learn more about albinism and enjoy an afternoon of bowling.

http://www.events.org/sponsorship.aspx?id=35728

Bowl in NJ to benefit NOAH!

Feb. 26, 2012
Hanover Lanes
East Hanover, NJ
1-4 p.m.

$15.00 for 1.5 hours of bowling & shoes (includes a small donation to NOAH)

You can donate via this page to pay for bowling or pay in person at the event. Please RSVP to noahnycmetro@gmail.com