These are words from the Join Our boys website:
At 2pm on the 9th of November 2012 we heard the words that no parents should ever hear:"I am so sorry to tell you that Archie, George and Isaac have a terminal disease called Duchenne Muscular Dystrophy; there is no treatment or cure."
Duchenne is a catastrophic muscle wasting disease that causes muscle tissue to die. It mainly affects boys and robs them of their hopes; their dreams and ultimately their life.
At that moment the life we thought we had planned abruptly ended.
On average, between the ages of 8 - 12 years children with Duchenne lose the ability to stand and walk and require a wheelchair. As the disease progresses they lose the ability to use their arms. If they live long enough they become totally paralysed and require artificial respiratory support to breath. Ultimately they die of heart failure. Children as young as 6 years old have died of the complications of this vile disease
Archie is now 14 years old.He is no longer able to stand or walk and his ams are becoming weaker. He is an incredible young man. He is, and always has been a very content, happy and sociable child, or should we say teen? He loves to laugh and has a wonderful sense of humour. Whilst he has many gifts, perhaps, the greatest is his tenacity! He loves his dog; his friends; sport ; school; learning to play drums; cooking; ice cream and cake! He is the most fantastic, caring role model to his brothers and loves them very much. Archie is our angel and is loved & adored very much
George is 9 years old and is an identical twin. George can no longer stand or walk and is becoming weaker by the day. He is a wonderful caring child, whom from a very early age has been able to anticipate, and be sensitive to the needs of others. He loves to laugh with everyone ! George loves going to school; looking after animals, people; learning about history, especially ancient history! He loves his brothers. He is also obsessed with going to church and lighting candles! George is one of our greatest gifts and is loved & adored very much
Isaac is George’s other half! He is a gorgeous, sensitive little boy who loves cuddles and kisses! Isaac’s greatest love is his brother George! Isaac, just like his brothers is now also paralysed. He is obsessed with sport – any sport. He loves sharks; the beach; learning about wildlife; Teddy bears! He is also obsessed with going to the Church & lighting candles! Isaac is one of our many blessings and is loved & adored very much
The Join Our Boys Trust was launched on the 9th of March 2014, in the Abbey Hotel in Roscommon Town. The event was feature on the RTE news that evening. In essence it is a Community Imitative; a community response to one family’s crisis.
The Trust is managed by three Trustees and consists of four working groups, each of which has a lead. These groups are The PR/Communications Group; the Fundraising Group; the Clinical Research Group and the House Building Group. Every single person working in the Trust does so voluntarily.
Archie, George & Isaac have complex needs that require additional resources to ensure that they can remain as independent as possible for as long as possible. The local community have fund raised extensively to fund the building of a specific house that will belong to The Trust. The family will ‘borrow’ the house for the time it is required for the boys. This large bungalow will need to accommodate three young boys using motorised wheel chairs, as well as other medical and therapy equipment. Everyone who has worked on this project to date has done so free of charge. ….The building of the house commenced last year. The challenge we have is that we require another €400,000 to ensure that it can be completed. Our current home is nothing more than an obstacle course for the children and this just adds to their daily struggles. We also fund translational research projects that have the potential to help everyone with Duchenne, regardless of the genetic mutation that they have. To date, the projects we have funded relate to the development of the micro dystrophin programmes. If successful, this potential treatment would slow down the disease considerably. The challenge is this work still requires millions of €$£'s to provide this life changing treatment.
We are also working to ensure that people with Duchenne in the Republic of Ireland have the same opportunities to access clinical trials, and new treatments as they become available as their peers in other parts of Europe. To achieve this we collaborate with all relevant stakeholders to ensure there is a partnership approach.
Our ultimate aim is to ensure a treatment or cure is found for this catastrophic disease in time to save the lives of Archie, George, Isaac and all the children in this generation diagnosed with DMD
The benificaries of The Trust (legal entity) are Archie, George & Isaac Naughton. Aidan Farrell is a Trustee of the Join Our Boys Trust www.joinourboys.org
The funds will be spent to meet the aims of the Trust stated above.
- Joanne Kelly
- Deirdre McKenna
Organizer and beneficiary
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