Michael and Donna Thirkettle’s 19-year-old son Jed was diagnosed with Ullrich congenital muscular dystrophy when he was eight years old. They set up Team Jed, to raise awareness and funds for Muscular Dystrophy UK’s Ullrich CMD Appeal and have raised an incredible £200,000 so far.

Jed’s condition, which is very rare, is progressive and there is no treatment or cure. Everything he can do physically is limited, from walking and running to the daily struggle of climbing stairs.

Michael and Donna were aware from a young age that Jed had a form of myopathy. The symptoms included ‘floppy’ limbs and poor muscle development but they were initially told that over time he would catch up with his peers. They experienced a range of emotions after learning Jed’s initial diagnosis and then again with the confirmation of the diagnosis of Ullrich congenital muscular dystrophy.

Michael said, “Jed is an amazing boy and despite the challenges facing him in life, he lets nothing get in his way. His strength of character is awesome and is known throughout his circle of friends for always having a smile on his face. Always the funny man, he lets nothing stand in his way!”

“While still a few years off, clinical trials may well yet play a part to treat Ullrich congenital muscular dystrophy in Jed’s lifetime. Research is the way forward and clinical trials hold the hopes for thousands affected by the condition. With the huge steps forward in medical science, the priority must be funding research to discover a cure, preventative treatment or even a way of slowing down the symptoms or delaying the muscle-wasting timescales.”

Over the past five years, family and friends, Jed’s friends and classmates and their parents, teachers and even his clinician from Great Ormond Street Hospital have taken part in a huge range of fundraising challenges. They have done everything from climbing Kilimanjaro, to taking part in desert marathons, skydiving, triathlons, talent shows and the stunning RideLondon 100 miles cycling event.

In 2016 Team Jed, alongside McBains Cooper and Muscular Dystrophy UK, launched Pedal Paddle Peak, a new challenge event set in the Lake District.  This epic challenge saw Jed’s father Michael lead a team across water, mountain and bicycle around the lakes – all in a hard days work!   This is an exciting challenge event taken on in teams of four culminating in a celebration dinner in the beautiful surroundings. If you would like to join this year’s exhausting yet incredibly rewarding event, please register your interest here.

How you can help

You can show your support for Team Jed by donating through their Just Giving Page.

Setting up a family fund like Team Jed is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.

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