UHS family looking for help

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Johnson Family

***UPDATE: The amount of money raised as of Dec.21 is $41,825. The goal remains $80,000.***

A Unionville-Chadds Ford School District family is looking for assistance for two family members in need of medication, a drug the FDA declined to approve.

According to an email sent out by U-CF Director of Communications Dave Listman, UHS teacher Joanna Johnson has two sons with Duchenne muscular dystrophy, defined as a genetic disorder characterized by progressive muscle degeneration and weakness.

The Muscular Dystrophy Association says DMD patients have a limited life expectancy. “Until relatively recently, boys with DMD usually did not survive much beyond their teen years. Thanks to advances in cardiac and respiratory care, life expectancy is increasing, and many young adults with DMD attend college, have careers, get married and have children. Survival into the early 30s is becoming more common, and there are cases of men living into their 40s and 50s.”

There is a drug — Ataluren — that claims to slow the degenerative process and treatment with Ataluren did give Elliott and Henry more mobility. But the FDA has rejected approval of the drug. There is an appeal of the decision, but the drug will stop being available if that appeal fails.

Joanna Johnson said in the televised report that the drug was “a life changer” for her sons, but that she’s “terrified” that all the positive changes will go away if they can’t use Ataluren.

According to CBS Philly — Channel 3 — “The FDA is expected to have a decision on the appeal around Christmas. The Johnsons are hoping they have something special to celebrate.”

In the interim, family friends are trying to generate support for a van that would help the family transport the boys and necessary equipment.

In his email, Listman included a message from family friends and supporters that reads: “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.”

To that end, a Go Fund Me account has been set up at https://www.gofundme.com/25daysofxmasjohnsons. The requested donation is $25 per person, more if possible, during the 25 Days of Christmas.

In the past 11 days, 139 people have donated almost $13,000. The goal is to raise $80,000, so the family can buy a van to make it easier to transport Elliott and Henry, their scooters and possibly wheelchairs.

 

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