Your Health: August 22, 2013 Albinism awareness - ABC 33/40 - Birmingham News, Weather, Sports

Your Health: August 22, 2013 Albinism awareness

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The Miller family. (Special to ABC 33/40) The Miller family. (Special to ABC 33/40)
Birmingham, AL -

Along with arrival of a  new beautiful baby boy comes the unexpected along with unanswered questions and a unwavering mission for one Hoover couple.
   

ABC 3/40's Linda Mays shares David and Niya Miller's unique story building awareness and acceptance, while tearing down stereotypes of Albinism.

David and Niya Miller heard... "It's a boy" when little Noah was born last May. But, that wasn't the only surprise.

Niya Miller says, "We also found out that his appearance was very different from ours. Probably four months later we were at the pediatrician for a routine visit. The pediatrician suggested I make an appointment, his words were, immediately to see a pediatric ophthalmologist. He noticed Noah's eyes were doing some scanting."

Scanting or shifting from side to side.

The ophthalmologist  suspected little Noah had what's known as, Nystagmus, an eye movement disorder due to Albinism.

Something Niya had never heard of before.

Immediately, her expectation for a totally healthy baby was overcome with grief and fear.
 
The 32-year-old mother says, "Noah is a normal toddler one and a half years old, he's active. He loves his big sister."

Also Noah loves pets and music. He's a beautiful baby boy who happens to have Albinism which causes him to have a pale skin tone. His body doesn't make enough melanin due to a gene carried by both of his parents. The pigmentation disorder also affects his hair and eyes.
 
Niya Miller says, "It results in uncorrectable low vision light sensitivity is one of the symptoms and it's not limited to sunlight.  It can be indoor lighting.

Even though Noah wears glasses, there's an aspect of his vision that cannot be corrected with lens or surgery. Otherwise, Albinism has not caused trouble in Noah's development, he's on track. It has created a mission for his family.
 
Niya Miller says, "One of those implications from albinism that's not physical is that negative stereotype.  Fear of the unknown. People fearing as an abnormality like a freak of nature, a mistake. That's what I want to correct!" "People mean well they would ask where did he get that blonde hair from, those eyes, I've had people ask if he ere my biological child. Those things can be hurtful."  

That made Miller, a college communications teacher start to withdraw, at first.

Niya Miller says, "In the beginning going out if I had to bring him with me. I'd cover him but I'd think I can't take the rest of his life or mine hiding or trying to avoid having this conversation. So, we're gonna come out so to speak."
 
And coming out was easier with support.

The Millers came across an organization, ironically, called... N.O.A.H. NOAH. The National Organization for Albinism and Hypo pigmentation.

Niya Miller says, "What I wanted to do was try and connect with other families in this area  that have children or people with albinism.  Because I find that having a community that's where you draw your strength and support."

The Millers held a bow-a-thon last year, as their coming out event and to raise money for the organization.

Little Noah is making a positive difference in a big issue among people:                 understanding and sensitivity toward others.
    
Niya Miller says, "I've been teach public speaking for 10 years and I've never had a student who's going to give a speech but not speak.  I wanted to hug her. I wanted to say I'm so  proud you are here. If you're in college that means you've navigated all the other milestones in your education. And you are confirmation there is not a limitation."

It's really a life lesson for all about unconditional love that reaches beyond any color or disability.

Niya Miller says, "I think I'll tell him people are like rainbows they come in a variety of shades and we don't get to pick and choose which color we're going to be and I'll tell him that he is still African American just lighter."
 

The Miller family is already making a difference. The bowl-a-thon raised $5,000 for the national organization.

NOAH offers teleconferences and webinars for families as well as provide sun screen, sun glasses even small information cards about Albinism to hand out.

To reach the Millers, you can send an email to: niypic@gmail.com  

For more information, visit NOAH's website at http://www.albinism.org/ or its FacebooK page at www.facebook.com/NOAH.Albinism

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