Help this baby fight often fatal, rare disease

Posted at 11:33 AM, Apr 05, 2016
and last updated 2016-04-05 11:33:19-04

William Reynolds is still a baby, but he’s a fighter. However, he needs your help to raise money to help find a cure for his rare disease.

William has Pearson Syndrome, a bone marrow failure disorder that also affects the pancreas, heart, eyes, ears and brain. Half of the children diagnosed with Pearson Syndrome die before the age of 3 and those who survive infancy develop Kearns-Sayre Syndrome, a disease that affects the eye muscles.

Pearson Syndrome is incredibly rare, with only 100 reported cases in the last 40 years. The Champ Foundation, which was started by William’s parents, aims to raise the funds doctors need to study the disorder.

On Saturday, April 24th, there will be a benefit for the Champ Foundation at Buffalo Riverworks. There will be auctions, raffles, food, live music and special guest appearances by Baby Joe Mesi, Andrew Peters and more.

Janet Snyder and Sue O’Neil will host the benefit from 1-6pm. Tickets cost $35. You can call 716-912-4022 for tickets or visit this website.

The Champ Foundation hopes to raise $250,000 each year for the next six years to help fund research into Pearson Syndrome. The foundation is currently working with researchers from the best children’s hospital in the world for grant proposals.