The charity that I have chosen to support for YDC 126 is...
JOINING JACK
You may or may not have heard about Jack
But you may recognise some of these...
Tour De France winner Sir Bradley Wiggins
Rugby League SuperStar Sam Tomkins
Presenter Clare Balding
These are all Joining Jack, with the Joining Jack Salute.
Jack is the son of former Rugby League player Andy Johnson.
ABOUT JACK (From his parents)
Our son Jack is everything a six-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. He recently started school, and is enjoying these first steps on 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.
ABOUT DMD
Duchenne Muscular Dystrophy 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.
Thanks for reading, and I know many of you lovely YDC'ers on here will be happy, like me, to JOIN JACK
Links for further info (Thanks Annie)
http://joiningjack.org/
https://www.justgiving.com/joiningjack/donate/
https://www.facebook.com/JoiningJack