Family Battling Metachromatic Leukodystrophy Awarded with Trophy

During a charity event, a proud UK father pushed his daughter on her wheelchair for 21 miles to raise money for her rare disease.

Connie Elson is only 9-years-old, but she suffers from Metachromatic Leukodystrophy (MLD), a rare degenerative disease which renders her paralyzed. The disease affects approximately one in 40,000 people worldwide, primarily children. It is a genetic disease, but parents are typically not affected. There currently isn’t a cure. To learn more about MLD, click here.

It was the yearly Coniston to Barrow Walk. Ian walked his daughter along the entire 21 miles and raised a record breaking £5,142. All proceeds went to the Butterfly Hugs charity.

At the event, which was attended by his wife Nicola and five friends, Ian was awarded the Pierce Armstrong Memorial Trophy for being the individual who raised the most money in the history of the tradition.

In addition, their team also secured the Alice Pyne Memorial Trophy for being the team to raise the most money with a total of £6,230.

“It’s her trophy not mine,” said Ian to the Westmoreland Gazette. “Everyone was really pulling together and the amount of people that showed up was amazing.”

Connie’s mother, Nicola, spearheaded the group The Butterfly Hugs with her friends, in order to raise awareness for the childhood disease and to connect other families suffering from it.

Though there isn’t a cure for MLD, there is currently a gene therapy occurring in Italy that has successfully prevented the symptoms for it. Unfortunately for Connie, she has already begun experiencing the symptoms, and the therapy does not reverse them.

Next on their list of fundraising events is a live music festival next year located in eight venues across Cartmel. To get involved with the Butterfly Hugs and donate, click here.

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