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Chester County Press

Family behind Run For Our Sons needs the community's support

12/12/2017 09:57AM ● By J. Chambless

Elliott and Henry Johnson.

By John Chambless
Staff Writer

The local family who inspired the annual Run For Our Sons fundraiser for research into Duchenne Muscular Dystrophy is the focus of a fundraising campaign this holiday season.

On Dec. 1, a Go Fund Me page was started by friends of the family to raise money for a van that will make transportation easier for Elliott and Henry Johnson, who have Duchenne. Their mother, Joanna Johnson, is a Unionville High School teacher. While the annual run raises thousands of dollars every year for Duchenne research, none of the money goes to the Johnson family.

To take the boys anywhere, Joanna and her husband, Paul, must lift them and place them into the car, then load their wheelchairs, and repeat the process when they get to their destination.

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, “Our community has shown such kindness and generosity for those in need, far and near. … Today we are sharing information with you about a family in need, right here in our community -- the Johnson family. The Johnsons helped start the Run for Our Sons, an annual spring fundraising event. However, now is a time when the Johnsons themselves could use a helping hand.

“Imagine how difficult it is when you can’t have your family just hop in the car and drive off to your destination,” Listman wrote. “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.”

The message included a link to the Go Fund Me page, which on Tuesday morning had raised $12,646 of its $80,000 goal for the purchase of a new van.

On the page, the message reads: “Having a van that Elliott and Henry could roll into would be life-changing for the Johnson family. The need for a van that a scooter or wheelchair can roll and be locked into isn’t just a “nice to have,” but a necessity. Unfortunately, the expense is great and is not covered by insurance or other alternative means. So we’re asking, as you bake holiday cookies, drop off gifts and visit with family and friends – can you spread a little bit more love by participating in a campaign to 'get the Johnsons rolling?'

“Our goal over the 25 Days of Christmas is to reach out to as many people we can and ask them to donate $25 (or more if you are so inclined) to the Johnson family, so they’ll be able to purchase the van that can accommodate Elliott and Henry’s scooters and eventual wheelchairs,” the message reads.

“To know Elliott and Henry, Paul and Joanna, is to know people that are quietly heroic, wonderfully brave, and a lot of fun. Let’s create our own holiday magic and bring some joy to Paul, Joanna, Elliott and Henry by donating $25 and encouraging as many people as we can to donate!”

Donations are being accepted online, and checks are also being collected at the Unionville High School office. Checks should be made payable to the Johnson Special Needs Trust.

To donate, visit www.gofundme.com/25daysofxmasjohnsons.

To contact Staff Writer John Chambless, email [email protected].