Heartbreak of dad, 32, who’ll never be able to give his two girls a cuddle again – Mirror Online

Posted: Published on October 2nd, 2019

This post was added by Alex Diaz-Granados

A dad has shared his heartbreak at no longer being able to cuddle his daughters because of a muscle-wasting disease.

Sam Hawyes, from Cwmbran, Wales, can barely even pick up a glass of water because of his type 2A limb-girdle muscular dystrophy condition.

Mr Hawyes, 32, was diagnosed with the illness when he was 21 years old and it has become progressively worse over the years.

He told Wales Online that if he now falls over he cannot get up by himself, something he said he would find funny if it was not such a common occurrence.

The dad added: "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."

Mr Hawyes, 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 Mr Hawyes' 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," the father 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, Mr Hawyes said his family have spent the past 11 years searching "incessantly" for any sign of treatment or clinical trials.

But now the dad, who currently lives in Caernarfon, 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 I might be able to reclaim my independence and lead an entirely different life to the one I'd imagined."

The treatment involves two weeks of intensive stem cell treatment which, including accommodation, will cost around 15,000.

Mr Hawyes, 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, click here .

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Heartbreak of dad, 32, who'll never be able to give his two girls a cuddle again - Mirror Online

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