May Edition eSpecially Parents: Denise's Story

Denise

Luke is a sweet three year old with CHARGE syndrome. He has had a rough start in life with multiple surgeries, hearing loss and developmental delays. Despite all his challenges, he almost always has a smile on his face and a deep laugh which is very contagious.

As I mentioned in my first post, Luke has facial weakness on the right side of his face which makes his smile lopsided. About one year ago, our family traveled to Houston and Luke underwent a 10 hour procedure to graft his masseter (chewing) nerve to his weakened facial nerve. After waiting almost a year for the graft to grow Luke can now make a full smile when he bites down and clenches his teeth.

It is sometimes hard to see the success of the surgery since Luke cannot understand what he needs to do to
activate his new smile. We still see the same lopsided smile each day. On the other hand, when Luke is able to make the correct facial movements to evoke his new full smile it is extremely exciting for us to watch and makes the difficult journey worth it.

So what makes me smile most about Luke? I would definitely say seeing him smile, lopsided or not.

eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catch-up, read more here.

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