My body is wasting away at 32 – I’ll never be able to cuddle my little girls again – The Sun

EVERY dad treasures that special moment when they get a cuddle from their son or their daughter.

But for Sam Hawyes he will never be able to do that again.

The dad-of-two, 32, is no longer able to hug his young daughters or pick them up because of a devastating disease that is causing his muscles to waste away.

Sam, from Cwmbran in Wales, can barely even life up a glass to drink because of his type 2A limb-girdle muscular dystrophy condition.

He told Wales Online: "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 was first diagnosed with the illness when he was 21 years old – just three years after leaving school at 18 to pursue a career in radio.

He progressed to the role of producer, however, everything changed when he received his diagnosis.

He soon began struggling with doing basic things some people take for granted.

Sam said: "Walking up stairs, putting on my shoes and doing up my buttons were causing me trouble.

"I could still manage my day-to-day routine so I just kept calm and carried on."

Despite this, Sam's condition continued to deteriorate and it now affects his daily life.

In particular, he falls over regularly and cannot get up by himself – something he says he would find funny if it did not happen so often.

He added: "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.

"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."

Despite this, the thing that Sam find the most difficult is not being able to hug his daughters – Ella, seven, and Erin, four.

He said: "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."

Sam and his wife Zowie have spent the past 11 years desperately searching "incessantly" for any treatment options or clinical trials that might be able to improve his condition.

And after years of research, they now believe a clinic in Beijing, China, may be the answer.

What is limb-girdle muscular dystrophy?

Muscular dystrophy is the generic term for a genetic condition that sees the muscles in the body weaken and eventually waste away.

It is caused by a mutation in genes that the sufferer inherits from their parents and often runs in families.

There are many types of the disease and some don't cause disability or affect life expectancy.

Limb-girdle muscular dystrophy mainly affects the muscles closest to the body (proximal muscles), specifically the muscles of the shoulders, upper arms, pelvic area, and thighs.

In the early stages of limb-girdle muscular dystrophy, affected individuals may have an unusual walking gait, such as waddling or walking on the balls of their feet, and may also have difficulty running.

As the condition progresses, people with limb-girdle muscular dystrophy may eventually require wheelchair assistance.

Muscle wasting may cause changes in posture or in the appearance of the shoulder, back, and arm.

Weakening of the heart muscle occurs in some forms of limb-girdle muscular dystrophy.

Some affected individuals experience mild to severe breathing problems related to the weakness of muscles needed for breathing.

In some cases, the breathing problems are severe enough that affected individuals need to use a machine to help them breathe.

He said: "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.

"I had resigned myself to a life in a wheelchair and in need of constant care.

"This treatment gives me some hope I might be able to reclaim my independence and lead an entirely different life to the one I'd imagined."

The treatment, which involves two weeks of intensive stem cell treatment and includes 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.

He said: "If the treatment works, the first thing I intend to do is pick up my girls and give them a squeeze."

You can donate on Sam's GoFundMe page here.

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