Dad ‘can no longer hug his children’
A DAD has revealed the heartache of being unable to hug his two young daughters due to a progressive muscle-wasting condition.
Sam Hawyes, originally from Cwmbran, was diagnosed with limb-girdle muscular dystrophy type 2A when he was 21.
While it started off as a relatively mild problem, he said it has now progressed to the stage where he is unable to perform even the simplest of tasks.
The 32-year-old said: “It has not only robbed me of my confidence, independence and career, but it has also – and most painfully of all – robbed my two little girls of the silly, energetic father that they deserve.”
Sam, dad to Ella, seven, and Erin, four, said he left school at 18 to pursue a career in radio and progressed to the role of producer. But everything changed three years later when he started struggling with some basic things most people take for granted.
“Walking up stairs, putting on my shoes and doing up my buttons [were causing me trouble],” he added. “I could still manage my day-to-day routine so I just kept calm and carried on.”
Limb-girdle muscular dystrophy (LGMD) is a diverse group of disorders which usually affect the hips and shoulders. The age at which symptoms appear, and the speed and severity of disease progression, can vary from person to person.
But in Sam’s case, the condition has become so debilitating it is now affecting his daily life.
“It’s now a struggle to drink from a glass, a monumental challenge to get out of a chair and an impossibility to walk up a curb,” Sam added.
“If I fall over I can’t get up on my own. If it didn’t happen quite so frequently I’d find it funny.
“As frustrating as these daily challenges are, the thing that upsets me most is that I can’t pick up my girls to give them a cuddle.”
As the condition is incurable, Sam said his family have spent the past 11 years searching “incessantly” for any sign of treatment or clinical trials.
But now the Caernarfon resident believes a clinic in Beijing, China, may be the answer to his worries.
“At first I didn’t want to get my hopes up, but having reviewed the clinic’s credentials and results with my consultant in the UK, it seems there’s a real possibility the treatment has the potential not only to stop the progression of the disease, but to reverse some of the damage it’s already caused,” he said.
“I had resigned myself to a life in a wheelchair and in need of constant care. This treatment gives me some hope.”
The treatment involves two weeks of intensive stem cell treatment which, including accommodation, will cost around £15,000.
Sam, who has had to give up work, has now set up a GoFundMe page in the hope of raising the money he needs.
“If the treatment works, the first thing I intend to do is pick up my girls and give them a squeeze,” he added.
■ If you would like to donate go to https://www.gofundme.com/f/stopsam-falling-over