Louise and Will set up a Family Fund when their son, Jack, was diagnosed with Duchenne muscular dystrophy. They fundraise for vital research into this condition and to raise awareness of the everyday challenges people with muscular dystrophy face.
Backing Super Jack Family Fund
Our crazy family is made up of four wonderful and somewhat wild children, Sophia, Jack, and Will’s (Jack’s dad) older boys, Joshua and Alfie. We love to venture out and about as a family on walks, park visits, theme parks, farm trips, picnics…. and anything else that keeps the children entertained!
After an extended wait for our son Jack’s medical appointment, we found ourselves at the paediatric consultation at John Radcliff Hospital. We were prepared to discuss neurodiversity due to some delayed development in Jack.
Unexpectedly, the paediatrician raised concerns about a potential neuromuscular condition. This revelation, along with subsequent appointments and tests in the following days and weeks, completely blindsided us.
The confirmation of Jack’s diagnosis of Duchenne muscular dystrophy (DMD), which predominantly affects boys, left us speechless. It was a devastating diagnosis, and from the initial appointments to the final confirmation, we existed in a haze of heartbreak.
Experiencing such profound heartache was unimaginable to us. Duchenne muscular dystrophy was entirely off our radar, and we’ve since learned that many parents and caregivers express a similar sentiment. We firmly believe that this awareness gap needs to close; parents must be educated about this condition and equipped to recognize its signs.
Since Jack started using a wheelchair for distances, I’ve become acutely aware of how inaccessible the world still is. NHS-issued wheelchairs for children are heavy, clunky, and unsupportive, yet private options are financially out of reach for most families.
If you’ve followed our story this far, thank you, expect to hear more from us on our Facebook page as we navigate this journey, striving to raise essential funds and awareness along the way.
Net proceeds from Backing Super Jack will be split 80% to research into Duchenne muscular dystrophy and 20% to help support Jack’s welfare needs.
