LIVING FOR TODAY: THE BOY OF 14 WHO HAS ENTERED MIDDLE AGE
DISEASE COULD END TEENAGER’S LIFE BY 26
MOST 14-year-old boys are still at the very beginning of their lives, but Alex Hallam is now considered middle-aged.
Alex, of Queniborough, has a rare form of muscular dystrophy called Duchenne, a genetic degenerative disease in boys that tragically cuts their expected life span to an average of 26 years.
But Alex knows he is lucky, still being able to walk when the average boy loses that ability at about 12.
He also has an amazing positivity that keeps him going and dreaming of a life.
His parents, Emma and Andy, set up the Alex’s Wish charity and are constantly raising money to find a cure for the disease or treatments that could slow down the devastating effects it has on boys’ bodies.
Emma said: “Typically boys with Duchenne muscular dystrophy live some time into their 20s and that’s the situation now unless we get new treatments.
“But because Alex was diagnosed when he was four he has grown up knowing information about it from a young age and we’ve just always focused on the positive.
“We live for today and plan for tomorrow.
“He loves learning at school and all his hobbies like baking and has goals about what he wants to do when he grows up.
“We don’t spend a lot of time dwelling on the negative.”
The positives, she said, included the fact Alex was still walking and the hope of a cure for the disease.
There is also a new drug in clinical trials. Alex is part of the trial, which could be what keeps him able to walk.
He is unsteady on his feet, having
weak muscles, and his condition means treatments and drugs such as steroids which have various sideeffects.
Emma said: “He has had problems over the past year, particularly because of the daily steroids he needs to take to keep his muscles going.
“The side-effect is they also make his bones weaker and more likely to break. He broke his hip when he was nine and it’s a constant risk.
“The steroids also make him gain weight, which just puts more strain on his bones, and his growth is stunted, too.
“It delays puberty, as well, and he has a lot of backache from having some compression in his spine, which could lead to scoliosis.
“Before Christmas it did get a bit overwhelming and he didn’t want to go to any more hospital appointments – it was about two every weeks at that point.”
But she said her son managed to mostly look on the bright side.
She said Alex also benefited from wonderful friends who treated him as an equal, as well as a supportive younger sister, Isla, seven, who is always on hand to help and encourage him.
Emma said: “Isla helps with fundraising and when he falls over – which he can do – she is always there to help him.
“When we last went on holiday he was struggling to get out of the sea on the soft sand and Isla went to help him and ask if he’s okay.”
Inspired after hearing all about Alex’s struggles, two motorcyclists are preparing for a 5,700-mile journey to raise money for Alex’s Wish.
Businessmen Stan Hulme and Matt Daly will ride from Leicestershire to the Arctic Circle and hope to raise £100,000 for the charity.
Stan had heard Emma speak about her son during an event last year.
He said: “Emma stood up at our networking group several months ago and said something that as a father, hit me like an anvil.
“She told us that Alex is now considered to be middle-aged at the tender age of just 14 years old. I knew I had to act.”
The pair hope to set off in May, travelling across England, Holland, Germany, Sweden, Denmark, Norway and Finland on their motorbikes.
They plan to film the trip and hope it can be made into a short film or series.
Emma said she was amazed by what the pair were attempting. She said: “It’s just phenomenal – it would be a huge accomplishment.”
For more information about the bike ride, see the pair’s Facebook page at:
www.facebook.com/TheInspiredRider Donations can be made via: virginmoneygiving.com/fund/
NordicAdventure