My first article for NY Daily News about “PJs for PJ,” a fundraiser to aid a five-year-old boy suffering from Duchenne muscular dystrophy, featured on pg. 36 of Thursday’s (12/18/14) paper:
On the outside, Pietro Joseph Scarso looks like an ordinary kid.
On the inside, though, the 5-year-old Brooklyn boy is deteriorating.
That’s because Pietro is one of 3,500 boys worldwide born annually with Duchenne muscular dystrophy, a fatal degenerative disease that weakens muscles at an aggressive pace.
Most boys with Duchenne start using a wheelchair between 7 and 12, and often do not live past their 20s, experts say.
“It’s heart wrenching because you know every day is a day closer to an ultimatum,” said state Sen. Martin Golden (R-Brooklyn), who is helping Pietro’s parents promote “PJs for PJ,” a pajama party fund-raiser that will be held Thursday at 30 city schools.
Dressed-down students in some Brooklyn, Staten Island and Manhattan public schools will don their sleepwear to help raise awareness and funds for potential treatments and a cure.
Wearing pajamas symbolizes the “the spirit of childhood” Pietro’s parents hope they can still give their son, they said.
The event is organized by their nonprofit, Pietro’s Fight, which has collected about $750,000 in donations since Pietro’s diagnosis in 2012.
The fund-raiser comes as the Scarsos and other families affected by Duchenne are pushing the U.S. Federal Drug Administration to fast-track approval of an experimental drug that has helped some boys go from using wheelchairs to walking.
Read more here.