Author: Alexis ValtenbergsPatient or Advocate: Alexis ValtenbergsDisease Affiliation: 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.

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