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Chester County Press

Fundraisers succeed in raising money to purchase handicapped accessible van

02/19/2018 12:25PM ● By J. Chambless

Joanna Johnson with her sons, Elliott and Henry, at their home near Downingtown (2016 file photo).

By John Chambless
Staff Writer

The community came together over the past three months, with donations big and small, to fund the purchase of a handicapped accessible van for a local family.

Joanna Johnson, a teacher at Unionville High School, sent a note through the school district on Feb. 13 to thank all the people who contributed to several fundraisers and a Go Fund Me page. “This amazing community showed up big and with all of the money raised we are shopping for a handicapped accessible van and hope to have it in our driveway this spring,” she wrote.

The couple's sons, Elliott and Henry, have Duchenne Muscular Dystrophy. It is the most common fatal genetic disorder diagnosed in childhood, affecting about one in every 3,500 male births – about 20,000 cases each year, worldwide. The Duchenne gene is found in the X chromosome, so it primarily affects boys. Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin, a key muscle protein. In the absence of dystrophin, muscle cells are easily damaged. The weakness leads to inability to walk, and damages the heart and lungs. Most young men with Duchenne don't live past their late 20s. There is no cure.

Duchenne can be hereditary, but about 35 percent of cases occur due to a random mutation, called a “nonsense mutation.” Elliott and Henry are in that 35 percent.

The Johnson family has needed a van that is equipped to carry a scooter or wheelchair for the boys. The van is not covered by insurance.

While the successful Run for Our Sons held in Chester County each spring raises money for Duchenne research and treatment, none of the money goes to the Johnson family. So the community stepped up. On Jan. 6, the Unionville Basketball teams played Garnet Valley in a girls/boys doubleheader. A collection was taken for the family through concession sales and donations. On Jan. 28, Sovana Bistro in Kennett Square donated a percentage of the tab for meals, beverages, and takeout orders to the Johnson family. On Dec. 1, a Go Fund Me page was started by friends of the family to raise money for the van.

In a message sent to the families in the Unionville-Chadds Ford School District on Dec. 12, Dave Listman, the district's head of communications, wrote, “Imagine how difficult it is when you can’t have your family just hop in the car and drive off to your destination. Imagine having to transfer your children from their scooters into the car, and then load the scooters in the back of the car. Imagine then having to do it all in reverse after arriving at your destination. Imagine having to unload the scooters and transferring your children back to their scooters so they can enter their home.

“Imagine the Unionville extended family and community donating enough money so the Johnson family could purchase a van to transport Elliott and Henry independently and safely. As Elliott’s and Henry’s disease progresses, the need for a van that two wheelchairs can get into safely is not a luxury; it is a necessity. And the necessity needs to be filled now. So, imagine being a part of honoring this heroic, brave family who deserves our support.”

As of mid-February, the page had raised almost $60,000 of the $80,000 goal, which allows the Johnsons to begin looking for a suitable van.

In the family's message to the community on Feb. 13, Joanna Johnson wrote, “I am finding it incredibly difficult to find the right words to say thank you, but truly, there are no words to express our overwhelming gratitude for your generosity. Every time I think about what this community has done, I am brought to tears by all of the people, near and far, current and retired colleagues, past and present students and their families from grades K-12, and so many people that I do not know or have never met who gave so selflessly and sent messages of encouragement and love.

People often ask me how we stay so positive. How can we possibly be down when we are supported over and over again by so many people? When you open your heart to the kindness of others, anything is possible. Your incredible kindness makes our hearts so very full. Many blessings for you and yours for 2018.”

Visit the Johnson Family GoFundMe page:

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