Join Our Boys Trust 5.16

Donate:

https://www.gofundme.com/joinourboystrust

Join Our Boys Trust
Bank Name: Bank of Ireland Roscommon
Sort Code: 905424
Account No: 26481623
IBAN: IE78 BOFI 9054 2426 4816 23

https://www.idonate.ie/1450_join-our-boys.html

www.joinourboys.org

On the 9th of November Paula & Padraic Naughton were told that their then 6 year old son Archie and his twin brothers, George & Isaac 2 1/2 all have a catastrophic muscle wasting disease called Duchenne Muscular Dystrophy (DMD). Despite both being nurses, they had never heard of DMD, despite it being the biggest genetic killer of children on the planet. They have since learnt that most other people had never heard of it either.

DMD means that their muscles lack a protein called Dystrophin. Without this protein our muscles essentially cannot function properly and very rapidly they become fibrosed (hard) and they die. 99% of children born with DMD are boys but 1 in 50 million children are girls.

On average children with DMD lose the ability to walk between the ages of 8 - 12 years but some children never walk. Then their arms become weaker and weaker; they can no longer feed themselves; wash themselves; brush their teeth; scratch their nose or hug the people they love. Can you even image that? By their late teenage years ( if they live that long), they become totally paralysed. They require ventilation to stay alive and are fed through a tube into their stomach. They ultimately die of respiratory and or heart failure. It really is a vile disease. It is impossible to imagine watching one of your children dying in this way, let alone all three of them. Children as young as 7 have died from DMD. It is simply heart breaking.

In January 2013 they went to see the National Expert in Temple Street who advised them 'To go home and love your children'. To be told your children have a disease that has #NoTreatment & #NoCure is soul destroying. This totally incensed them and led them to begin the process of getting advice about how best to go about raising awareness and funds. With the help of their local community in Roscommon they launched The Join Our Boys Trust. The response has been phenomenal.

The Trust has been raising money to design and build a purpose built house that will accommodate Archie, George and Isaac for as long as they require it. The property needs to accommodate three motorised wheel chairs as well as all the other equipment that will be required to care for the boys in the absence of a miracle happening. The house will belong to the Trust NOT the family. Whilst a lot of money has been raised much more is required.

The Trust has also raised significant funds for translational research that aims to support something called gene therapy that has the potential to treat every mutation of the disease. Again much more money is required.

We understand that there are thousands of wonderful causes that need your help but we are not ashamed to say that we are utterly desperate. With each passing day our children are becoming weaker and weaker. This is the same for everyone born with this disease.

The positive news is that Translational Research is moving faster than ever before. We are particularly hopeful about work being done in the USA by a Biotech Company called Solid Bioscience www.solidbio.com The founders of this company, like us, have a 6 year old son who has Duchenne. They have employed the best Scientists; Medics and Professionals from Industry as well as ensuring that they partner with parent groups to ensure that every voice is heard.

If you would like to know more about us and what we are trying to do we would love to hear from you. Please e mail us at joinourboys@gmail.com or ring us on 085 1212 333

No one in The Trust is paid a salary or expenses. Everyone is a Volunteer. This is to ensure all funds raised go to what is needed most. We remain indebted to every single volunteer that has supported us and those who continue to walk beside us.

#KeepMoving #KeepMarching #NeverEVERGiveUP