Isaiah Huff has spent the past several years of his life shining the light on sickle cell anemia.
"I hope people see, like, what we go through," he said.
Those who have the genetic blood cell disorder have red blood cells shaped like a sickle or the letter "c," which can cause major complications including pain. Huff was in the hospital a couple of weeks ago and explains what it feels like to be in sickle cell crisis.
"It feels like a drum is pounding on me," he said, "or someone is squeezing like, if it was my arm, squeezing really, really tight," he said.
Huff has experienced dozens of trips to the hospital in his life, yet the future actor loves to play outside and is thriving, despite making adjustments to avoid crisis triggers for the disorder.
"I have a weather limit," he said, "if it's below 55 degrees, I wouldn't be able to go out. I just stay inside and play board games with my friends."
But Huff is resilient and always had a deep desire to help others.
He started a club he calls Isaiah Inspires, where he and his mother Shanna Huff take toys and books to kids hospitalized with sickle cell. He also hosts blood drives, writes books and designs "Sickle Strong" T-shirts that he sells online.
On June 19, he'll hold an evening event in Willow Grove at 8 p.m. where attendees will wear red and hold flashlights shining a light on the blood disorder.
"We just want them to spread the word about sickle cell," he said
On Wednesday, buildings across Philadelphia will be lit in red to raise awareness for sickle cell anemia.