Conor and Dean are living with Duchenne Muscular Dystrophy.
It is a fatal, muscle-wasting condition for which there is currently no cure.
At 8 and 6 years old, they both love music, dancing, wrestling and outer space.
As family and friends of their parents, Karen and Jamie, we want to do everything we can to support the boys with the many challenges that they will face each day.
Help us to build a future for them, in which this rare, life-limiting disability does not limit their dignity and their joy for living.
Living with Duchenne means that Conor and Dean are already struggling to do all the things that they love, like playing tag with friends, dancing to music and riding their bikes.
All funds kindly raised or donated will go towards the ‘Build for the Boys’ Trust, helping the boys to fulfil their potential and to minimise the impact of their limited mobility on all aspects of their lives.
Unfortunately, the family will need to move home and are currently seeking a suitable property in the local area. Extensive renovations will then be required in order to facilitate access and movement within the new dwelling for two full sized power-chairs. The installation of medical equipment and amenities will also be necessary. These essential facilities will need to include – ceiling hoists, profile beds and wet rooms so that the boys can live their lives with dignity and with some degree of independence. In addition, a specialised mobility vehicle will be purchased in order to transport the boys and their power-chairs to and from school, for activities, and for social visits to their friends and relations.
The Build for the Boys fundraising campaign was launched in September 2022 with the initial goal of raising €100,000 for our cause. With the phenomenal support of the whole community, this target was reached in January 2023; We are immensely grateful to all of you who organised or supported the many inspiring events that took place during this time in aid of the boys.
" We never could have imagined the level of support that we have
received from you all so far. To say we are overwhelmed is an understatement.
To each and every one of you who have donated, organised events,
supported and cared – you have made such a difference to our boys and
their future and we cannot thank you enough.”
Karen, Jamie & Boys, Jan 2023.
Our aim is to continue with our efforts to provide all the supports that Conor and Dean will need, as the symptoms of this cruel condition become more and more debilitating over time. Based on initial estimates for the necessary adaptations to a new property, it has become clear that an extended fundraising campaign will be required in order to reach our goal. To this end, a new target of €250,000 has been set by our fundraising team.
The intention of our ‘Build for the Boys’ campaign is to also raise awareness about Duchenne Muscular Dystrophy in our 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 – when dealing with a diagnosis of the condition.
As a fundraising team, we want to be as proactive as possible in providing all of the assistance and care that the boys will inevitably need.
Every single donation will be gratefully received and will help us to build a future for Conor and Dean.
If you would like to get involved with fundraising events or help in any other way, please click on the link below. Be part of our journey . . .