I'm running a half marathon in October, and I'm using that as a way to raise money to support my nephew, Damien, and his family.
Damien is 4 years old and has mucopolysaccharidosis II (also called MPS II or Hunter Syndrome). It's a rare degenerative disease that means his body doesn't produce an enzyme that breaks down sugars and proteins throughout his body.
He has a tough road ahead, including:
- joint pain, muscle stiffness, and a limited range of motion
- narrow airways leading to difficulty breathing
- experimental enzyme infusions weekly for the rest of his life
And his family will need to pay for:
- medical treatments
- medical specialists
- adaptive equipment
So how can you help?
- Contribute! Maybe a dollar a mile? Ten dollars a mile?
- Spread the word. Forward! Share! Link! Tweet!
Everything will help, and everything will be appreciated.
- karen sarfaty
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