Family grieving as dad is diagnosed with devastating disease with no cure


As the Covid pandemic raged in March 2020, Sean and Claire Weldon felt their whole world collapsed when the father was diagnosed with a devastating illness

Claire Weldon and her husband Sean

One family was heartbroken after their father was diagnosed with a devastating illness.

Sean and Claire Weldon lived happily with their family of three and admit life was “pretty normal”, Birmingham Live reports.

But as the pandemic raged in March 2020, they felt their entire world was crumbling.

Sean was then devastated after being diagnosed with motor neuron disease (MND).

There is no cure for the disease and it has changed family life beyond recognition.

Claire, 36, worked at a local cafe while Sean, 44, worked as an asbestos remover.

Now things are very different for the couple and their children, ages nine, 11 and 13.







Sean and Claire Weldon tied the knot as soon as they could after the lockdown
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Picture:

Claire Weldon)


Claire told BirminghamLive: “I had never really heard of MND until he was diagnosed,” Claire said. “It was as if our whole world was falling apart.”

The couple tied the knot in July 2020 – as soon as they could after the lockdown was eased. It was one of the many things that changed since Sean’s diagnosis.

“We hid it from the kids and our friends for a while until we could figure it out,” Claire continued.

“But we didn’t want it to beat us, so we decided to make as many memories as possible.

“Getting married was one of them and we were on vacation with the kids.







The couple received a dreamy wedding reception after Sean was diagnosed with motor neuron disease
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Picture:

Claire Weldon)


“These were limited [in terms of] where we could go since Sean is in a wheelchair. He could use a mobility scooter back then, but he can’t now.

“As a family we all support each other. I’m her only caregiver so it can be tough, but we work together and the kids have been great.”

When Claire says she doesn’t want the disease to beat them, she really means it.

The 36-year-old started a GoFundMe to raise money for the treatment in the hopes it will give her husband more time.

She said the family had done a lot of research on drugs from different countries and wanted treatment in New Jersey.

They spoke to another person with MND who has lived with the disease for eight years by the same route.

Claire said the family remained “desperate” and explained how some people with MND can expect to live between two and five years.

The disease ultimately results in death, according to the NHS, but the time it takes to reach this stage varies a lot.

Some people live for many years, if not decades, with motor neuron disease, the NHS website says.

“Sean has already lost his ability to walk and move his arms,” Claire explained.

“Her voice is fine now. It breaks our hearts and we just want to try whatever we can.”

Claire said she wanted to tell the family story to raise awareness of the “cruel” disease.

“If people could donate or even share, it’s a treatment in America that could potentially give Sean that extra time with his family,” she added.







Sean with daughter Briley, 13
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Picture:

Claire Weldon)








Sean and Claire Weldon have been together for 18 years
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Picture:

Claire Weldon)


“We are desperate to try anything because people with MND are quick to come.

“It will happen in two years [since the diagnosis] in March, but first noticed symptoms three years ago in May. “

Claire’s GoFundMe page says, “Sean was diagnosed with motor neuron disease on March 4, 2020 with no cure for this terrible, life-limiting disease.

“Since then he has lost all ability to use his body. He cannot walk or move his arms and is slowly losing his speech.

“He has three young children aged 13, 11 and nine and would love nothing more than to watch them grow up, have children and get married.

“It breaks our hearts to know that there is nothing to do, so we have done a lot of research on drugs from different countries.

“With a little help I got information from a friend who knows someone with MND. They received treatment from America, New Jersey.

“It hasn’t gotten any worse and it’s been eight years now. Obviously it’s not a cure, but it could give Sean time to find a cure or some extra time to watch his children grow up.”

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