Big turnout for brothers with rare disease

A fundraiser in aid of two young boys with a rare muscle-wasting condition, Conor and Dean, took place this past Sunday, September 7 at LoLo’s Hairdressers in Ballyfermot, reports Áine McEnroe.

The two boys, Conor and Dean Thompson, aged ten and eight, are living with Duchenne Muscular Dystrophy. To which there is currently no known cure.

But the boys are both lively and witty who enjoy swimming and gaming, and the family started fundraising for them back in 2022 to give them a better quality of life.

The family have recently set up a petition on change.org to speed up the process to get the boys’ life-changing medicine to slow down their condition, medicine that is not currently available in Ireland.

The boys mother, Karen Thompson, told The Echo, “It’s only been approved in Europe for boys that are still walking, so every day counts.”

“We’re hoping the Minister of Health will do something to speed that up. Time is muscle and the boys don’t have a lot of either.”

“They’re struggling a bit now, especially Conor, he’s coming to that age where most boys would come off their feet.”

The fundraiser was described as a success, with a huge turnout and donations from local shops. The boys mother thanked all who got involved and made the day so meaningful, “I hope they know how much it means to us as a family.”

The funds are to go towards a build on the family’s house, to make it more accessible for the boys, “We feel the boys should be able to access every room, like every child.”

“They’re going to have so much restrictions outside in the world that I don’t want to have any in their own home.”

“It’s not about what they can’t do, it’s finding a way to do it.”

People can get involved and find more information at Buildfortheboys and there is a link for the change.org petition on their Instagram @buildfortheboys.