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April 24, 2018

4/10/2018 11:24:00 AM
Fundraiser for 7-Year Old Battling Terminal Disease
By Kira Bigwood


Local foundation New Genes Inc., invites the community to their New Genes for Harry silent auction, to benefit Orrington first grader Harry Stilwell. The fundraiser will take place at Firehouse Grill on Saturday May 19, from 7-11 p.m. Tickets can be purchased at newgenes.org/news.

By all accounts, Harry seems like a typical seven-year old. He loves playing X-box with his big brother, and baby dolls with his little sister. He is into football and basketball. And his gushing mother describes him as a fun, cuddly, cheeky little boy with a beautiful sense of humor.

Unlike most other children, however, Harry is fighting for his life. Diagnosed with neuro-degenerative Juvenile Batten Disease in 2016, Harry is – quite simply – in a race against time. His only hope? Getting into a gene therapy trial.

“When Harry was diagnosed, our world fell apart,” said Harry’s mother, Susan Stilwell. “Harry getting on the trial will enable us to breathe again, and have some hope that the progression of this nasty disease can be arrested.”

But a trial needs funding. New Genes Inc. aims to raise an ambitious $200,000 to take the clinical trial from the lab, to reality. Harry’s fundraiser is crucial to achieving that goal.

“We simply cannot do this alone. To make this event a success, we are humbly calling on Evanston business owners and residents to donate items or experiences, large and small, to be auctioned off at the event,” said Stilwell. “It takes a village, and we truly appreciate any way in which the community can help us on this unexpected journey.”

As unexpected, and uncertain, as the journey is, Harry’s determination is a reminder of just how resilient children can be.

“He’s lost 90% of his vision, yet, ’I can do it Mum!’ is something I hear a lot,” said Stilwell. “He never complains. He just gets on with it.”

To purchase fundraiser tickets, or make a donation to the foundation, visit newgenes.org/news.

To donate an auction item, email Susan at susan@newgenes.org.

 

 







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