A local family is honoring its late son, Pete Henkel, by continuing to bring awareness to spinal muscular atrophy and advocate for its treatment, writes Melissa Jacobs for Main Line Today.

Pete was 13 years old when he died in January 2018. He enjoyed attending Radnor Middle School and playing Philadelphia Flyers PowerPlay wheelchair hockey. That is how his two siblings, Lucy and Chris, described him in front of more than 2,000 people at St. Thomas of Villanova Church.

“We told stories that reminded people to first laugh, and then that he was a kid with a disease,” said Ian.

Pete did not have use of his leg muscles when he was diagnosed as an infant. Throughout his life, he had nine spinal surgeries and many trips to emergency rooms due to respiratory issues.

He joined Cure SMA, an advocacy and support group, with his parents, Tim and Allyson.

They linked their efforts to getting Spinraza, which slows SMA’s progress, approved by the FDA in 2016. They persevered after Pete’s death and were successful, as state officials included SMA on the newborn screening panel in September.

Read more about the Henkels in Main Line Today by clicking here.

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