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Daily Mirror
Daily Mirror
National
Megan Banner & David Clark

Man died suddenly from rare disease on New Year's Day leaving family heartbroken

A family have spoken of their grief after a man died suddenly from an extremely rare and aggressive disease on New Year's Day.

Jason Tolson was only 30 years old when he died from a condition called Anti-MDA5 Dermatomyositis while being treated in intensive care.

The disease is so rare and aggressive that no cure has yet been found.

Dean Blakeley, Jason's father-in-law, from Batley, hopes to raise awareness of the condition following his son-in-laws death on New Year's Day.

Jason's health problems began when he started feeling unwell in May 2022, complaining of muscle aches and joint pains.

Yorkshire Live reports that he also began losing hair and weight rapidly.

Jason with his girlfriend Jade, whose family are keen to raise awareness of the condition (Dean Blakely / SWNS)

Dean claimed doctors didn't move quickly enough to find out what was causing Jason's health to deteriorate so quickly.

After Jason began to get sores on his body, he changed to a different doctor who then ran some tests, including CT scans, MRI scans, and cameras in his body - searching for cancer which doctors believed was a possibility at the time.

Six weeks ago, Dean took Jason to Pontefract Hospital because he had been left unable to walk or even hold a pen to write with.

However, the doctors told them it wasn't cancer.

Dean said: "It was a big relief when we knew it wasn't cancer, we thought oh great this is it now he will get better."

Soon after, doctors told Dean that they believed the health problems were being caused by his immune system, which was attacking his body.

Jason was then taken to Pinderfields Hospital due to his low blood pressure and heart rate, where he remained until New Year's Day.

Jason (left) succumbed to Anti-MDA5 Dermatomyositis, a systemic autoimmune disease which targets the lungs and causes muscle weakness (James Evans / SWNS)

At the hospital, Jason was diagnosed with Anti-MDA5 Dermatomyositis and was put on 16 different drugs and steroids to try and treat the condition.

Dean said: "The prognosis is very bleak because it is so rare they don't know how to treat it, it's just a case of dealing with other specialists. It's a game of trial and error."

On January 1, Jason's family were called to say his condition had deteriorated to the point that he wouldn't survive, giving them the option of either upping his oxygen to keep him alive for a short period or turn it off.

Dean said: "He was going to die so we made the decision to not make him suffer anymore; he passed away in about 10 minutes of his oxygen being removed.

"It was awful because he was so looking forward to getting out and had made big plans. The first thing he wanted to do was to go to TGI Fridays. We thought he would've been home for Christmas."

The family are asking for any donations to help towards the expense of funeral costs to give Jason the send off he deserves.

Dean added: "Jason was the most kind and caring young man you could meet, he was extremely hard working and a loving partner to Jade for years and it is devastating to lose Jason at such a young age."

You can donate to the gofundme page here.

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