Our son Jack is everything a five-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
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.