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Ways to help
In December 2018, our amazing son Eben was born at St James’ hospital Leeds. The soundtrack in the delivery room that day included songs like All I want for Christmas by Mariah Carey and Coolio’s Gangsters Paradise; whenever we hear these songs on the radio they bring back unforgettable memories.
Eben has always stood out from the crowd. He was born with a full head of hair and started talking from an early age, even able to make animal impressions from the age of one (thanks Grandma!). Eben has a magnetic personality and he makes friends with everyone, especially with others who like dinosaurs just as much as him! He’s such a happy, funny, caring boy and we all love him so much.
From birth Eben’s been under the brilliant care of physios, neurologists and other NHS teams attempting to understand why physical tasks like crawling, walking and lifting are harder for him. Two and a half years into his care and following a muscle biopsy we were finally given a diagnosis. It was a day we had been waiting for and one which was hard to face. Eben was diagnosed with Ullrich Congenital Muscular Dystrophy (UCMD), as he presents symptoms and his muscles are unable to produce Collagen VI protein.
UCMD is a severe, life-limiting, progressive condition that leads to extreme muscle weakness. It affects the skeletal muscles which impacts areas like walking; if Eben gains the ability to walk, he will lose this skill in early adolescence. He is also likely to face respiratory issues, muscle contractures and scoliosis later in life. Treatments and equipment are available to help manage these but sadly, there is currently no cure for UCMD… However, the promising research being done in this area gives us hope.
Getting the diagnosis was a huge shock to everyone but Eben continues to be our inspiration. We’ve been overwhelmed by the support we’ve received from the people around us and it gives us the determination to make a difference for Eben’s future and others living with UCMD. A Wish for Eben aims to raise much needed awareness and funds to enable more research.
Fundraising will be split 80/20 between MDUK’s research into Ullrich Congenital Muscular Dystrophy and help support Eben’s future welfare needs.
Thank you so much for your support, it means so much to our family.
Rory, Helen, Eben and Lyra.