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My name is Jackson. If you donate some dollar bills, I could go up some hills…on my new bike! I won’t be a slouch, laying on my couch! Help me get a bike, so I can go on a hike!

Jackson was born with a rare muscle disease called Central Core Disease. It is a form of congenital muscular dystrophy and affects Jackson in many ways. It causes general muscle weakness, so Jackson cannot walk independently and relies on a manual wheelchair, forearm crutches and a walker to ambulate. The disease also causes many medical issues such as fragile bones, restrictive lung disease and scoliosis. Jackson is followed by many medical specialists for his disease and gets infusions for his bones twice a year, pulmonary function testing twice a year and many x-rays and other tests to monitor his disease. Jackson was also born with both of his hips displaced and had nine hip-related surgeries to repair them along with many days inpatient at the hospital and hundreds of hours of rehabilitation and physical therapy.

Updates (2)

November 10, 2020

Jackson received his new bike last Thursday!!! Gritty, Flyers alumni, Flyers Charities and Help Hope Live presented the bike to Jackson at the Wells Fargo Center! Jackson was so surprised and so happy! He got to race Gritty around the parking lot and meet Flyers alumni Bob Kelly and Brad Marsh!! There were even three local news channels covering the event! I posted the video below of the news story on CBS! Also, I will posting pictures in the photo albums from that day and from some of Jackson’s bike rides over this past weekend.

We cannot thank everyone enough for their generous donations to help make this possible! While Jackson now has the bike, we still haven’t raised the funds to pay it off yet. Please consider sharing Jackson’s campaign page to your friends and family and purchase a raffle ticket for a chance to win an autographed Flyers puck! Just click on the blue “Fundraisers” box on this page.

Any funds we raise beyond our total won’t stop with the bike. Having a child with a physical disability and rare disease means lots of customizations are needed around our home. We still need to make the entrance of our home fully accessible to Jackson’s wheelchair, and need to create an accessible bathroom for Jackson. This January, Jackson will most likely have major reconstructive hip surgery and there will be expenses related to that procedure as well. There is always a need and we are so very grateful to Help Hope Live for creating this platform to help us obtain needed items for Jackson!

October 15, 2020

We are so grateful for everyone’s generous donations! It is humbling to see the outpouring of support for Jackson’s wish to get a new adaptive bike! We are getting so close to our goal!!!!!

There are some new pictures in the photo albums for everyone to check out. Jackson turned 12 on September 25th and we gave him the best COVID safe birthday we could! Jackson has been very busy with virtual schooling, weekly physical therapy at CHOP, virtual school physical therapy, and his many specialist appointments at CHOP. Jackson has continued to be his creative, fun and happy self in spite of it all!

Photo Galleries (5)

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Guestbook

November 13, 2020

Many prayers for you to keep moving!

Calista Phillips

November 6, 2020

So nice meeting you and your family and friends yesterday. Enjoy your new ride <3

Shannon Shensky

November 6, 2020

We love to see that big smile on Jackson.

Hayden Durnan

November 5, 2020

Jackson you are awesome! Keep up the great work you are doing!

Rich Sculli