Tuesday, October 6, 2015


Albinism, in Canada, affects about 1 in every 20,000-40,000 people.

The news of this statistic has impacted me in a lot of ways. It means that Scotlyn will most likely be the only person she knows in her schools growing up with this condition. It is what will make her not only visibly different, but her low vision will mean she will be unable to read social cues, witness stares, and possibly be subject to social exclusion, in the form of turned backs, which I have learned is a form of new bullying.

When we learned that with each pregnancy there is a 1 in 4 chance of each child having the same condition the first thing I planned to do was find out what we could do to avoid this. We learned that there are two options, amniocentesis after conception with a plan to terminate the pregnancy if the baby was affected and a costly 20,000 dollar option, in which they remove and test the eggs before implanting them IVF style, to ensure the baby doesn't have or carry the condition. Albinism is a recessive condition meaning each parent must carry the gene and the child gets one gene from each parent to be affected. Immediately, we dismissed the idea of terminating a pregnancy, as they call it. We told our family that we would, of course, be blessed to have another baby as sweet as Scotlyn. IVF, if affordable, seemed a promising and interesting thought. And then I had another thought, and if I'm being honest, it was more of an after thought after speaking to and reading about other families with children with Albinism and it was this:

By choosing to not have another baby like Scotlyn, what message does that send to her? Sure, the next baby, if they have Albinism, will too live a life a little harder than some, but what if the next baby also has Albinism and Scotlyn has a sibling to share her experiences with, so that she's not the only child in her school with glistening white hair and a seeing cane. Not to mention, Albinism is a visible condition and with that there are social implications, but what the child on the play ground who might tease or taunt Scotlyn won't realize is that they too someday might be met with a hidden genetic condition just as life altering like heart disease, or diabetes. That they, like Scotlyn, or any of us, aren't the perfection of health and will too be faced with difficulties in their own journey through this life.

Scotlyn might be the only kid in school with porcelain skin and hair the color of a honey snowcone, or she might not, and I think we will leave that up to DNA & a high power to decide because who I am to handpick a baby when Scotlyn was so perfectly handpicked just for us.

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