Join Our Boys
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PLEASE Share!!On the 9th of November 2012, Padraic and Paul Naughton were told that their three little boys, Archie, who was 6 and his twin brothers George & Isaac, who were 2 ½ years old were all going to die very prematurely of a muscle wasting disease called Duchenne Muscular Dystrophy. Despite both being nurses, neither of them had heard of Duchenne; It is the biggest genetic killer of children on the planet. In January 2013, they went to Dublin to see the National expert in Ireland, who told them to ‘Go home and love your children’. It was at this point they realised they must act. They had scoured the planet and realised that yes, this is a catastrophic disease but there is hope and there is a vibrant community working tirelessly to try and develop treatments and even a cure for this vile disease.
With the help and support of the local community, The Join Our Boys Trust was launched on the 9th of March 2014, in the Abbey Hotel in Roscommon Town, Ireland. 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. To be told that one of your children has a fatal disease, that currently has no treatment or cure is devastating. To be told your three children have a fatal disease that currently has no treatment or cure is beyond comprehension; it is beyond words.
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. Many, many people give a huge amount of their time, energy and skill and personal resources freely. Everyone involved has made a massive contribution to the project and it is only because of their kindness, compassion and dedication to the cause that so much has been achieved in such a short amount of time.
We have two main projects that we fundraise for:
Archie, George & Isaac will have complex needs that will 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 would ‘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 hope is that the building of the house commences this year.
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. Our hope is that in time, other treatments, ideally a cure will be developed.
In order to meet our objects in a timely manner, we need to an additional raise €800,000 within the next year. This is ambitious but very possible, but we need help and support.
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:
We hope to achieve this by working hard to:
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 & other organisations developing translational research projects into Duchenne Muscular Dystrophy that aim to develop treatments, ideally a cure into this devastating disease for all children and young adults with Duchenne Muscular Dystrophy.
To Keep Moving; To Keep Marching & To Maintain Hope.
Ask well as donating electronically here, transfers can be made directly to The Trust Account:
The Join Our Boys Trust
Bank of Ireland Roscommon
IBAN: IE78 BOFI 9054 2426 4816 23
Sort Code: 90 54 24
You can also help us spread the word by following us on:
If you would like to get involved with The Trust as a Volunteer or hold an event you can e mail us at email@example.com
ring us on 00353 8512 12333.
We would love to hear from you.
The past few weeks have been incredibly difficult chez Naughton's. We cannot bare to watch Archie, George and Isaac deteriorate so rapidly. George and Isaac are far worse that Archie ever was aged 7. We are heartbroken.
Archie is struggling to come to terms with his reality too. As he watches his friends become bigger and stronger he realises that he is becoming physically weaker and weaker. He is frightened and worried about going to 'big school' in September.
He has just asked me
"Mummy, do you think there will ever be any medicine to help me and the boys?"
"Do you think I will ever walk into school again?"
My answer can only be the truth: "Archie, we all hope and pray there will be some medicine, but we do not know when that will be. Without the medicine you will not be able to walk into school."
I wish he did not have to live with this vile Disease and the anxiety and worry it causes him. I wish I could lie and tell him that everything is going to be ok.
I wish he could do all the things he longs to do.... like walk up the stairs again and not need to ask for help to do the simplest of tasks. Alas, he cannot and unless things change, he never will do so many things independently ever again.
Life is unfair; it can be cruel.
I remain in awe of this little boy's capacity for resilience and Hope. We take our lead from him.
Thinking of every person struggling to live with this vile disease; I wish I could take away your pain and grief.
Thank you Archie John for teaching me so much darling boy.
#KeepMoving #KeepMarching #NeverEVERGiveUp
We must #NeverEVERGiveUp
on Archie, George and Isaac along with all who have DMD
As a family we have been very privileged to have recently returned from a wonderful trip. We meet lovely friends; some old, some new. We travelled extensively and visited beautiful and fascinating places. The boys learnt how to play baseball and enjoy gelato! As parents we had the opportunity to enjoy hours and hours of being 'present' with our children in a way that was so beautiful. We shall treasure the memories for the rest of our lives. There was so much joy.
Despite this there were moments when the shadow of Duchenne reared it's ugly head. How do you assist 3 children with mobility issues when there are only two adults? How do you answer strangers who stare and wonder why you are trying (and at times failing) to manoeuvre two 7 year olds through Manhatten in a double stroller that is really equipped for 3 year old twins?! Do you know what you just deal with it - often with a smile and a joke.
The bitterest challenge is standing by and observing your 11 year old son constantly falling and desperately attempting to get himself up off of the pavement by himself:
Seeing him bruised and grazed; bleeding and sore.
Meeting his big blue eyes and witnessing the fear and bewilderment in the sure knowledge that he is as terrified of what is to come as we are.
Last year I had the privilege to meet a wonderful man called Brian. Brian knows the devastation that Duchenne unleashes on a child and those who love that child; he is a Duchenne parent with vast experience. He told me that "the last year of walking with Duchenne is really ugly".
We have arrived at destination UGLY.
We know we are lucky - so many children with Duchenne loose their mobility years before they reach this age; some children never walk. The problem is none of us want this time to arrive. We hope, pray and dream that our child will be 'Lucky' and get a treatment before they can no longer walk. That is just what we all do.......A shared dream of the 'Duchenne Parents'.
Tonight as Archie was getting out of the bath we had one of our increasing 'ugly moments' and Archie became very, very distressed. Padraic just walked in to see what was happening when he heard the increased volume. Instinctively and unaware to myself and Archie he took these images. What struck me looking at them was how, despite his fear and sadness Archie is able to very quickly 'recover his composure' and share his beautiful smile again.
We wish we could make him better today; we wish everyone in the world with Duchenne could be cured today. Until then we will remain grateful for EVERYTHING we have each day.
We will keep hoping; we will keep praying; we will keep trying to make a difference and we will #NeverEVERGiveUp
We are so grateful to everyone who is trying to safely and quickly develop treatments for this vile disease that will save lives.
Thank you for your continued support, love and encouragement.
Love & Thanks.