Can you imagine being told that your only 3 children have a fatal disease for which there is currently no cure? This is the devastating reality that Roscommon couple; Paula and Padraic have to deal with every day of their lives. Their 3 precious sons, Archie, George and Isaac have all been diagnosed with Duchenne Muscular Dystrophy (DMD), a progressive neuromuscular disease that destroys muscle tissue. It causes progressive muscle degeneration and weakness, usually leaving the sufferer wheelchair bound between the ages of 8 – 12 years old and fighting for their lives by their late teen/early twenties. The disease primarily affects boys and unfortunately there is no cure for it.
The Join Our Boys Trust was launched in 2014 in Roscommon and has two main projects for which it raises funds:
- Archie, George and Isaac require additional resources in order to stay mobile and independent for as long as possible and this requires the use of motorized wheelchairs and other medical and therapy equipment. As a result, the Trust is planning to build a house which can accommodate such equipment for a family with DMD. Paula and Padraic will then ‘borrow’ the house for the duration of the time that their boys need it. €700,000 is still required to build the house.
- The trust funds research projects which have the potential to help those with DMD. The trust is currently funding a research project which focuses on a potential treatment to slow down the disease. The ultimate aim of research projects like this is to find a cure for the fatal disease.
This year, Join Our Boys is looking for those willing to walk, jog or run the VHI Women’s Mini Marathon in aid of the trust. This is an event which the Join Our Boys team take part in every year and so have set a target of 3500 recruits for the 2019 event, this would represent the 1 in 3500 newborn boys born with the disease worldwide. It would also help raise huge awareness around DMD and could help generate much needed funds.
The VHI Women’s Mini Marathon takes place this year on Sunday, 2nd June. If you would like to take part in aid of Join Our Boys, all you have to do is register at www.vhiwomensminimarathon.ie and then contact the trust on 0879225999 or [email protected]
If you cannot join in the mini marathon, please suggest the idea to your friends and family. With an increase in awareness and generation of further funds, we can hope for a brighter future for Archie, George and Isaac and all who suffer from DMD, with the ultimate goal being the discovery of a cure.