Jul 3, 2018

What Will the Future be Like for My Son?

Guest post from Steve’s mom, Catherine Kirugi

Like most kids his age, my 9-year old son Steve asks a lot of questions. But one of them always breaks my heart.

“Mom, why am I blind?”

When Steve was just a few months old, he was diagnosed with the eye disease Leber congenital amaurosis (LCA). My husband Dominic and I had never heard of LCA before, but now we know it’s one of the most common causes of blindness in children.

LCA affects young children. Most of them, like Steve, only ever see faint traces of lights or shadows.

Today, Steve has a pretty busy schedule. He has after-school activities like judo, swimming and goal ball, a sport specifically for the visually impaired. There’s never a dull moment.

When he’s home, we try to get him to do his homework and his daily chores. Like a typical 9-year-old, I have to remind him to make his bed and clean his room.

He’s got such an incredible, positive personality. But sometimes, when his friends are talking about things they’re doing, I can sense his frustration. I think that’s going to happen even more as he gets older, and starts to understand the challenges he’ll face in life. It’s something I think about every day.

Dominic and I are doing everything we can to prepare Steve for life as an adult. Not just an adult without vision, but an adult who can live to his full potential and contribute to his community.

We feel fortunate to have found Fighting Blindness Canada (FBC). They told us about cutting-edge research that could eventually help Steve and so many other kids like him.

We know how hard they’re working on finding the causes, treatments and, someday, cures for blinding eye diseases. That gives me so much hope for Steve’s future.

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