Naas racecourse will play host to a race sponsored by the Build For The Boys Trust, a charity dedicated to spreading awareness of Duchenne Muscular Dystrophy and to Conor and Dean, the young boys who are living with the rare condition.
Duchenne Muscular Dystrophy is a progressive, muscle-wasting condition for which there is currently no cure. The overall aim of the trust is to build a future for Conor and Dean, one in which their life limiting condition does not limit their dignity and their joy for living.
Through Lucan Bloodstock, which is run by Karl Keegan, Build For Boys will sponsor a race at Naas on June 28. Daithí Ó Murchú, who is an uncle of the two boys, has explained why the charity has turned to racing in its bid to spread awareness and ultimately raise funds for the hugely worthy cause.
He said, “I know that when Karl [Keegan] heard of the diagnosis, he said that he really wanted to do something to help the two boys. He said that he knew the racing community would come together when they heard the boys' story and would be a great source of support.”
Ó Murchú added, “We have been so overwhelmed by the support of people initially in the Lucan community in Dublin and now beyond. It has really bowled us over. People have gone above and beyond and we've only been fundraising since last September.
“The boys were diagnosed during lockdown but it just took a long time for the family to get their head around it. Since we've started fundraising, the support has been on one hand overwhelming and on the other hand, really inspiring and uplifting. Even with Karl touching base to organise this race at Naas, we've been really moved by everyone trying to help.”
Every euro raised will go towards the trust, ultimately helping the boys to fulfil their potential and to minimise the impact of their limited mobility on all aspects of their lives. As a fundraising team, the aim of Build For The Boys is to continue with their efforts to provide all of the assistance and care that Conor and Dean will inevitably need as their condition becomes increasingly challenging.
A specialised mobility vehicle will need to be purchased to transport the boys and their power-chairs to and from school, for activities, and for social visits to their friends and relations.
The family will also need to move home and are currently seeking a suitable property in their local area. Extensive renovations will then be required to facilitate access and movement within the new dwelling for two full sized power-chairs.
The intention of the Built For The Boys campaign is to also raise awareness about Duchenne Muscular Dystrophy in society; to help people understand the reality of living with Duchenne; and what is needed to support all children like Conor and Dean and their families.
Donations can be made through the trust's GoFundMe page while more information about Build For The Boys can be found on the website here.
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