Local foundation New Genes Inc., invites the community to its “New Genes for Harry” silent auction, to benefit Orrington first-grader Harry Stilwell. The fundraiser will take place at Firehouse Grill, 750 Chicago Ave., from 7 to 11 p.m. on May 19. Tickets can be purchased at newgenes.org/news.
By all accounts, Harry seems like a typical 7-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 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 literally – in a race against time. His only hope is 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 Ms. 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 Ms. Stilwell. “He never complains. He just gets on with it.”