My Brother Nikolai

July 12, 2022

Alexis Valtenbergs Duchenne muscular dystrophy
My brother Nikolai was born with Duchenne muscular dystrophy (DMD) and it ultimately killed him in June 2006. He was born 5 weeks premature in 1997 and he was our parents’ first child. They didn’t even know that DMD existed until my brother was diagnosed with DMD in 2001.

Nikolai died when I was only 6 years old, so when we were growing up his physical disability was normal to me. I didn’t question it and I took it for granted. My fondest formative memories all include my brother, my best friend and my rival who happened to be in a wheelchair and was dying. He was witty, intelligent, bright, and wise for his age. He could also be infuriating! I love him and miss him to this day.

The tragedy of losing my brother to a rare disease has indelibly altered my view on life, ultimately for the better. I feel his loss as a permanent absence, but he’s still here in my heart. He touched my life and I hope he touches yours.

Author: Alexis Valtenbergs

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