Archie (10) and his twin brothers, Isaac and George (6), have a catastrophic muscle wasting condition. Paula Naughton reveals how a team of women are raising awareness and money for her boys.
The Join Our Boys Trust was established following the diagnosis of three little brothers, Archie, Gerorge & Isaac Naughton with Duchenne Muscular Dystrophy (DMD). DMD is a Genetic Disease for which there is currently no treatment or cure . This seems extraordinary given the fact that it is the biggest genetic killer of children on the planet. Furthermore most people have never heard of it. The disease casues catastrophic muscle wasting and the children become paralysed between the ages of 8 - 12 years. They die of respiratory and or cardiac failure and in ireland the average life expectancy is currently 22 years of age. To learn that your threee sons have a disease like this is beyond devestating.
Paula and Padraic Naughton, together with their local community in Roscommon Town launced The Join Our Boys Trust on the 9th of March 2014 with the following aims:
• To raise awareness of Duchenne Muscular Dystrophy Nationally & Internationally.
• To ensure ‘Our Boys’ have the additional resources they require to function; to remain mobile for as long as is possible and to live a life filled with purpose and meaning, despite their physical limitations .
• To work in collaboration and support registered charities funding research into Duchenne Muscular Dystrophy that aim to fund a treatment or cure into this devastating disease.
• To Keep Moving; To Keep Marching; To keep positive and to maintain Hope.
This is the third year The Trust has had a team of women completing The VHI Women's Mini Marathon and it really is a fantastic event to help us raise awareness and funds. It is really helpful in that women seek sponsorship and in order to do this they need to tell the story of Archie, George, Issac and all the other people living with this horrific disease. Often other people then support us on social media and/or decide to hold an event themselves to spread the story and help rasie further funds. The challenge is that we need to rasie millions of euros as quickly as possible. Whilst we are acutley aware that there are many wonderful causes to support, in relation to this monstrous disease time is really of the essence. Archie is now 10 years old and the twins Isaac and George are 6 years old and they are becoming weaker with each passing day. We really want to try and save their lives and everyone else. We remain indebted and humbled by everyone who supports our casue.
There is a real need to improve the Clinical Services within Ireland but also to work with the International Community to help fund clinical trials in the hope that a treatment, ideally a cure can be found for everyone with Duchenne. That time cannot come quickly enough. The Trust has a strong Governace Structure and is run by volunteers so every cent you donate goes to achieving the aims of The Trust. If you would like to find out more about DMD and what we do please log onto www.joinourboys.org