Stuart Edwards

Stuart cycling 100 miles for Joining Jack

Fundraising for JOINING JACK

£245
raised of £100 target
Donations cannot currently be made to this page
Manchester 100, 28 March 2013
JOINING JACK

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RCN 1148156
We are raising much needed funds to help fight Duchenne Muscular Dystrophy

Story

DMD is a devestating disease, for which there is currently no cure. The children born effected by this awful disease are destined to a  tragically short life, which they will spend gradually losing the use of their body, ultimately ending up completely motionless and relying on a ventilator, until they will sadly often before they reach the age of 30.

I'm trying to raise money for the charity joining jack in the aim of helping to find a cure for this terrible disease.  If you'd like to know more, please read on The following information from the Joining Jack website.

About Jack.

Our son Jack is everything a four-year-old should be. He is cheeky, excitable and a big softy at heart. He loves to make dens, play hide and seek and wave his lightsaber like a Jedi Knight. In a few months time he will start school and cannot wait to begin his journey into the big wide world. But what our beautiful son does not yet know is that he has a terminal, incurable disease.

In October 2011 we received the shattering news that Jack has Duchenne muscular dystrophy (DMD). Failing a medical breakthrough, Jack's life will follow a predetermined path, mapped out by this progressive muscle wasting condition. In short, he will no longer be able to walk by the time he reaches adolescence and will lose the use of every single muscle in his body thereafter. He may need spinal rods to keep him upright and ventilation to help him breath. Eventually his heart and lungs will fail and he will die.

There are no words to describe the utter devastation felt upon hearing that your child's life will be cut short because there is no cure. We have had the greatest pleasure watching Jack develop into the amazing boy he is today but now, unbelievably, we must prepare ourselves for his steady decline. And the worst part? Seeing him struggle as his body wastes away and being absolutely powerless to help.

Since his diagnosis, we are not ashamed to say that we have cried every day and have spent endless hours scouring the internet to find answers. Currently there is very little awareness of DMD and research into finding possible treatments is drastically underfunded. However, over the past few years, with help from charities around the world, human clinical trials have begun to take place with encouraging results. It's for this reason that we have set up our own charity, to help move things forward for Jack and other children like him.

We have always wanted a quiet family life and have never felt comfortable asking for anything but now is not the time to be proud. We cannot sit back and watch Jack ravaged by this condition if there is any chance, that we can make his future a more positive one. From the bottom of our hearts we are asking if you can help join our fight to eradicate DMD.

You can contribute by making a donation, organising an event or simply adding us onto your facebook or twitter page. Time is precious to us now and for ANY support you can give we will be eternally grateful.

They say that children with DMD accept it better than their parents but the day we tell Jack he is not well will be the toughest day of our lives. To know that we are facing a future without our beautiful son is impossible to believe. At least with your help we will be able to tell him that we gave everything we had to this fight of all fights.

About DMD

DMD is one of the most common fatal genetic disorders to affect children around the world. Approximately one in every 3,500 boys worldwide is afflicted with Duchenne Muscular Dystrophy with 20,000 new cases reported each year in the developed world.

It is a devastating and currently incurable muscle-wasting disease associated with specific inborn errors in the gene that codes for dystrophin, a protein that plays a key structural role in muscle fibre function. Symptoms usually appear in male children before the age of five. Progressive muscle weakness of the legs and pelvis eventually spreads to the arms, neck, and other areas. By age 10, braces may be required for walking, and most patients are confined to a wheelchair by age 12.

Eventually, this progresses to complete paralysis and increasing difficulty in breathing, requiring ventilation.

The condition is terminal and death usually occurs before the age of 30.

The outpatient cost of care for a non-ambulatory DMD boy is among the highest of any disease. There is currently no cure for DMD, but for the first time ever, there are promising therapies in or moving into clinical development.

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About the charity

JOINING JACK

Verified by JustGiving

RCN 1148156
Joining Jack has the ultimate aim of finding a cure for Duchenne Muscular Dystrophy, one of the most common fatal genetic conditions in the world. Recent scientific breakthroughs mean that the development of a treatment is closer than ever, and this will not only help Jack but all sufferers of DMD.

Donation summary

Total raised
£245.00
+ £21.25 Gift Aid
Online donations
£85.00
Offline donations
£160.00

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