In June 2025 I will be attempting a 100km walk across the Lake District with family members and school friends, to help raise awareness and much needed funds to help people with muscle-wasting conditions. Your support means he world to me and my family.

Some of you will already know my family's story, but for those that don't.... 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! 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. 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 and Eben has never been able to to walk, 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, we've been overwhelmed by the support we've 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 is our family fund, and is aligned to UK charity Muscular Dystrophy UK, it aims to raise much needed awareness and funds to promote more research.

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

80% of funds raised will go towards UCMD research and 20% will be kept in a welfare account for Eben's future needs.