Soon after being born, he was diagnosed with Pearson syndrome. His parents said that since the disease was discovered in 1979 there have been only 100 reported cases.
In Pearson Syndrome, a large section of William's DNA was deleted some time during development. Over time, cells can die and lead to complications in several organs. It can impair the heart, kidneys, eyes ears and brain.
Doctors that ABC11 spoke to last year said children with this disease typically do not survive past age 3 or 4.
William was born in 2015 and received the diagnosis when he was 2 months old. His parents right away founded The Champ Foundation in Durham to raise money for research.
To date the foundation has raised $350,000 but it needs more.
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The parents are also excited to announce that The Champ Foundation has agreed to fund research at Sheba Medical Center in Israel and the University of Cambridge in England. The Reynolds said while the projects employ different approaches, both directly relate to The Champ Foundation's mission of finding better treatment and a cure for Pearson Syndrome.
"We are very encouraged by the caliber of projects submitted to The Champ Foundation this year and excited for these researchers to begin their important work," says Jeff Reynolds, President and Co-Founder of The Champ Foundation. "To our knowledge, the projects funded by The Champ Foundation are the only ones driving toward desperately needed treatments and a cure for Pearson Syndrome. While we recognize that there may be significant obstacles ahead, we are very encouraged by the innovative ideas and capabilities of the researchers tackling this problem."
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