Thanks for visiting our A Wish For Eben fundraising page, and for your interest in supporting our family to find viable treatments and cures for Ullrich Congenital Muscular Dystrophy (UCMD).

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 Coolios Gangsters Paradise, whenever we hear these songs on the radio again this brings back unforgettable memories.

Eben has always stood out from the crowd, he was born with a full set 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! Hes such a happy, funny, caring boy and we all love him so much.

From birth Ebens 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. Ebens muscles are unable to produce Collagen IV protein and alongside his symptoms this led to him being diagnosed with Ullrich Congenital Muscular Dystrophy (UCMD). 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 there is hope in the form of promising research being done in this area.

Getting the diagnosis was a huge shock to everyone but Eben continues to be our inspiration, weve been overwhelmed by the support weve received from the people around us, this gives us the determination to make a difference for Ebens future and everyone living with UCMD. A Wish for Eben aims to raise much needed awareness and funds to promote more research but if you would like to join us our fundraising please join our page and together we can beat this. 80% of funds raised will go towards UCMD research and 20% will be kept in a welfare account for Eben's future needs.

Thank you so much for your support, it means so much to our family.

Rory, Helen, Eben and Lyra.

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