The Jett Pack is a Family Fund set up by Lucy and David for their son Jett, who has Becker muscular dystrophy.
Meet Jett. He’s four. Jett is a funny, friendly boy who – like a lot of boys his age – loves music, tractors, and dinosaurs. When Jett was 18 months old, he was diagnosed with Becker muscular dystrophy. As his symptoms have developed, doctors have suggested his condition may not be Becker muscular dystrophy, and the family is awaiting a further diagnosis. Through The Jett Pack, Jett’s family and friends are fundraising for his needs and for Muscular Dystrophy UK.
Jett’s parents were heartbroken to receive the news of his diagnosis soon after a routine hospital visit with a paediatric consultant.
The doctor gently asked a lot of questions about his general development, and suggested we have some tests to check that all was well. We weren’t worried, it hadn’t occurred to us that there was anything serious wrong.
Until that day, Lucy and David had no idea that there was anything amiss. Both explain how they might have noticed the gaps if they already had other children,
“things that we had to work to teach him, that other babies and children just did intuitively were being missed. Jett was a loving baby, confident, with a smile for everyone and we just truly believed that all babies did things at their own pace.”
Jett finally began walking when he was two and can now run a little, though this is expected to be a temporary joy for him. He suffers pain and stiffness, with periods of excessive discomfort causing him to scream out and cry. He has jumped twice in his life.
Due to the worsening of his symptoms and very low levels of the protein dystrophin in his muscles, his condition is now considered ‘intermediate’.
Yet, despite life being harder for him than it should be for any little boy, Jett makes his friends and family laugh every day. He loves listening to music – anything from classical to heavy metal – and making up his own songs about his friends and experiences.
His mum, Lucy, describes Jett as
a charming boy who really does capture people’s hearts, not because they feel sorry for him but because he is just a lovely person.
The bulk of funds raised will be directed into research into the condition, with a portion being saved to pay for the specialist equipment Jett himself will need as he grows and his symptoms worsen. The family are planning ahead, accepting that Jett will require a motorised wheelchair and alterations to the family home will be essential to enable their son to live with dignity and independence.
Since their initial fundraising music event the fund has gone from strength to strength, gaining help from a local digital agency to develop the family fund brand and establishing a committee of dedicated supporters to help raise over £19,000 for research.
Dedicated supporters have completed the London and Yorkshire Marathons and a brave team of runners, including Jett’s dad, David, have taken on Total Warrior Leeds. Corporate supporters have held a charity golf day and trained hard to complete Tough Mudder.
Annual Christmas parties for local children in Ripon have also become a permanent fixture and The Friends of the Jett Pack group continue to build on community focused events.