Making Strides: Duchenne Muscular Dystrophy Doesn’t Hold This Young Man Back
Jessica F. describes her youngest son, Patrick, 18, as “always happy and smiling” and “wicked, scary smart.” In their family of four, Patrick is the one they turn to with questions, because he can recall memories and what people said verbatim. “He always has done well on tests and in his accelerated classes, so we are very proud, but not surprised, that he graduated high school with high honors this June and has been accepted to begin online classes at Purdue University Global this August,” she said.
A rare diagnosis takes them by surprise
Online classes make the most sense for Patrick because of his physical limitations due to a progressive disease called Duchenne muscular dystrophy (DMD). It is one of the most serious forms of muscular dystrophy that primarily affects males, causing muscle weakness and difficulty with standing, walking, breathing, and eventually, heart function. Jessica and her husband Rich had no family history of DMD, and their first son Kyle—now 19 years old, studying to be a pilot in college—is unaffected. Only when Patrick was diagnosed at the age of two did Jessica learn that she is a carrier for the disease, with a 50/50 chance of passing the Duchenne mutation to a male-born child.
Treatment and prevention keep Patrick moving along
At least twice a year, Patrick travels an hour and a half from home in rural Berks County, Pennsylvania—where they have “more cows than people”—to the Children’s Hospital of Philadelphia (CHOP) where he receives excellent care. He has been taking steroid therapy since he was 5, got his first power wheelchair when he was 10, and has no breathing or heart problems so far. As preventive measures, he takes three cardiac medications and uses a cough assist machine at home to help his lungs expand.
Reliable, compassionate care brings normalcy
Patrick has been a client of the BAYADA Pediatrics office in Reading, PA, since 2013. They provide personal care services from four hours after school and up to 10 hours a day when he’s home, enabling Patrick’s parents to work full time. Jessica is a registered nurse, so she (and Rich and Kyle) are well-equipped to provide care at home, but she is grateful for the opportunity to keep advancing her career as a hospital administrator for as long as she can.
“Having reliable, compassionate, qualified people in our home means we are still able to work demanding jobs,” said Jessica. “And for Patrick, home care services help him learn how to ask for help and advocate for himself—and help him be as independent as he can be.”
It’s a family affair: having fun while making a difference
This family definitely knows how to play as hard as they work. All four of them belong to their town’s volunteer fire company; Patrick participates in trainings and collects tickets and money at their monthly spaghetti dinner. And they all ride motorcycles! Rich is an instructor, and the whole family goes on group rides with their local Harley Davidson club. Patrick rides in the sidecar, thanks to a special lift made by a friend. There’s even storage space for a folding wheelchair in the back. They get together with other biker clubs every year to do the Ride for Life, a fundraiser for the Muscular Dystrophy Association.
Patrick met one of his best friends at a Harley event; Ethan is the same age and also has Duchenne. They visit each other and go fishing together at a pond near Patrick’s house. They play video games with Patrick’s crew of childhood friends as well as remote friends all over the world. Patrick also likes to find new recipes and help his mom cook, and he really loves football. In 2016 the Make-a-Wish Foundation sent their family to meet his favorite team, the Denver Broncos.
A positive attitude—and a big dose of humor is part of the care plan
Jessica says that Patrick’s health care journey has taught her that you need a good support system and a good sense of humor. “Be patient, allow yourself extra time to do everything, and don’t take ‘I can’t’ as an answer,” she reflected. “Patrick has a great sense of humor. He cracks us up with witty comebacks like, ‘I’m not going to stand for that.’ Just think positive, live in the moment, and keep doing as much as you can, for as long as you can.”
What’s next for Patrick?
At Purdue Global, Patrick will be studying Applied Science in Information Technology with a vision to become a video game tester who finds and fixes bugs in software programs. Congratulations Patrick! We wish you all the best as you live life to the fullest every day.