Brave youngster battles to contain a rare disease - 09.07.2010

CHARLTON THEAR’S dad is one of five brothers, all fiercely competitive ‒ and that’s just how he sees himself.

Tragically, though, the 13-year-old suffers from McArdle’s disease, a rare metabolic disorder which causes muscle pain in everyday activities and exercise.
For the past three years the youngster, eldest of three brothers, has been able to do little in the way of physical activity.
Instead, he has turned his attention to fund-raising for AGSD-UK, the charity group concerned with McArdle’s disease, or to give it its correct name, Glycogen Storage Disease (GSD). 
Charlton, who lives with his family in Puerto de la Cruz, will shortly be taking part in a huge fund-raising event, the Walk Over Wales, which is exactly what it says.
Unfortunately, the 2102-mile route, from north to south, is far too much for Charlton to contend with, but he is determined to complete the final 26.5-mile stage, alongside his mother, Alison.
His story, as told by himself, is both heart-rending and uplifting.
“From about three years old, my parents saw I got tired easily and, as the months passed, I would complain of tired legs.
“When I was six, my parents took me to our doctor, and for the next 18 months I had tests and more tests. Then, when I was eight, we went to The Centre for Life and here we were told I had McArdles disease.
“We now visit the McArdles Clinic, and we have contact with other sufferers, who have helped us understand this rare disease and with tips and advice.
“Over the years, I have taken part in sports like football and basketball. But I had to give up as I could not keep up with friends and family.
“I am 13 now and I have a good understanding of what I can do and what I cannot do. I have mostly good days, and my family and friends understand that I may fall behind or need a rest at times.
“The Walk over Wales is great as our disease is so rare that no one we know has heard of it.”
The walk began last Friday and finishes on 2^nd August, and Charlton, together with his mother, Alison, are planning to cover that final stage in three days.
Charlton adds: “I class myself lucky and with the right advice and some common sense, I can control my McArdles.
“Please give a donation to help us produce a planned DVD as this will help sufferers and their families in the future, and bring awareness to the disease. The idea of a DVD is fab!”
If you would like to know more about McArdles, or would consider donating to the charity, please visit www.agsd.org.uk


Charlton also has his own website http://www.justgiving.com/charlton-darren-thear on which you can follow his courageous adventure through life.