My son Jonah’s clock is ticking – CNN.com

Becoming a mother has made it even harder to read stories like these:

It’s left to the parents to lay all the groundwork to de-risk treatments for the drug makers. Our consortium wants to create a patient registry, conduct a natural history study and fund a treatment so we can hand it over to a drug company in hopes a treatment will be created.

Jonah could be the first child to ever walk away from Sanfilippo type C. He’s priceless, and just like the thousands of other children affected by a rare and fatal genetic disease, he deserves a chance to live.

via My son Jonah’s clock is ticking – CNN.com.

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