Strong Great North Run team for Ella’s rare condition

Published Date
06/09/2019
Author
Kate Cleaver
Category
Fundraising

Ella was just four when her mum Clare and dad Craig received the devastating news that she is one of the very few British girls who are manifesting carriers of Duchenne muscular dystrophy.

Clare and Craig had raised concerns prior to Ella’s diagnosis as her mobility seemed delayed compared to her peers and they became increasingly worried when Ella did not walk, even though she was nearly 18-months old.

After watching Ella struggle to do things other girls her age do, they are determined, along with the supportive family and friends, to help make a difference for their daughter and others with Duchenne.

The #teamella fund set up by the family for Muscular Dystrophy UK has so far raised a fantastic £56,000. Now they are hoping their 17-strong Great North Run team will boost the total even further on Sunday 8 September.

Craig said: “It was difficult for us to come to terms with Ella’s condition and we still don’t clearly understand the difference between Duchenne in males and females.

“What we do know is that we are absolutely committed to raising money for research and improving awareness. We are focusing on our special girl and the other rare girls like her.”

Duchenne occurs when a gene that produces dystrophin (a protein in the muscles) is faulty. It is a genetic, life-limiting condition that cause muscles to get weaker over time. As a manifesting carrier, Ella has the faulty gene that causes the condition. She also has the Duchenne symptoms.

Muscular Dystrophy UK Regional Development Manager – North East & Cumbria Susanne Driffield said: “We are trying to drum up support for the #teamella runners as we know how difficult it is to raise money.”

 

If you would like to donate, see www.justgiving.com/fundraising/craig-dixon13 or call Craig on 07798-660075.

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