UCF urges community to support Johnson family

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By JP Phillips, Correspondent, The Times

The Johnson Family some years ago. Image courtesy Unionville-Chadds Ford School District.

Joanna Johnson is a Spanish teacher at Unionville High School.  11 years ago, she and her husband Paul, received a devastating news about their two very-young sons.  Elliott (now 14), and Henry (now 12) were both diagnosed with Duchenne Muscular Dystrophy.

According to the Parent Project Muscular Dystrophy website, Duchenne is a debilitating muscle disease that strikes mostly boys.  Two-thirds of cases are passed from parent to child, while a third of the cases are from random spontaneous mutations.  As the disease progresses, muscles deteriorate. By the time most patients are in their teen years, they are wheelchair-bound. 

A group of caring friends and supporters formed a “Go Fund Me” page at the end of November.  The goal is to raise $80,000 for a van capable of easily transporting the boys and their wheelchairs or scooters.  Even though the van is essential at this stage of the boys’ disease, it is not covered by their insurance.

The Go Fund Me page states it well: “Imagine how much tougher it is when you can’t just hop in the car, but have to transfer your children from their scooters into the car, and then load the scooters in the back. You then have to do it all in reverse after arriving at your destination. Elliott and Henry Johnson have Duchenne Muscular Dystrophy, and that means that they, and Paul and Joanna, their parents, struggle with every car trip and every outing.”

Anyone who has transported a physically disabled person who uses a wheelchair or scooter knows this to be true.  Transporting children with strollers can be difficult enough.  Think about the challenges the Johnsons must face.  What an improvement having a van with a ramp and a way to lock wheelchairs in place would be.

The Johnson family started the “Run for our Sons” 5K event in 2009.  The Run passes through the Fox Lee Manor and La Reserve developments, ending across the street at the Middle and High schools.  To date, they have raised over $350,000 for Parent Project Muscular Dystrophy, an organization that supports research to end Duchenne.  This year’s Run will be held on Saturday, April 21st.  None of the proceeds go to the Johnson family.

Aligning with their 2016-17 school-year theme of Kindness, Unionville High School has been eager to assist.  Last year, they helped raise over $50,000 in hurricane relief for the Hardin-Jefferson school district in Texas.  The school’s next event in support of the Johnson Family is on Saturday, January 6th, when the Unionville basketball teams will take on Garnet Valley.

This past fall, the Johnson family received a setback.  For many years, the boys have been part of a drug trial (Ataluren) that has been successful in slowing the progression of their illness.  In October, they were informed that the Food and Drug Administration (FDA) declined to approve the drug, leaving its future uncertain.  According to a letter sent by the drug manufacturer (PTC Therapeutics), the FDA states “evidence of effectiveness from an additional adequate and well-controlled clinical trial(s) will be necessary at a minimum to provide substantial evidence of effectiveness.”

“To know Elliott and Henry, Paul and Joanna is to know people that are quietly heroic, wonderfully brave, and a lot of fun,” the Go Fund Me page continues.  “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!”

As of January 4th, over $48,000 of the $80,000 goal has been raised.

Donations can be made through the Go Fund Me link (https://www.gofundme.com/ 25daysofxmasjohnsons).    The high school office is also accepting checks written to the Johnson Special Needs Trust.

Parent Project Muscular Dystrophy link: http://www.parentprojectmd.org

Run for our Sons Facebook page:  https://www.facebook.com/UnionvilleRFOS

Unionville High School Basketball Fundraiser: http://ucfsd-community-news.blogspot.com/2018/01/ucf-community-support-for-johnson-family.html

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