A man has suddenly died of a rare disease which 'nobody has ever survived'. Jason Tolson, 30, passed away on New Years Day after a battle with an aggressive immune disorder, reports Yorkshire Live.
The 30-year-old from Yorkshire was diagnosed with Anti-MDA5 Dermatomyositis last year after his health began to deteriorate. Dean Blakeley, Jason's father-in-law, wants to raise awareness of the disorder following his son-in-law's tragic death.
Jason began to start feeling unwell in May 2022 and started to lose hair and weight. The 30-year-old then began to get sores on his body and underwent several tests.
These included CT scans, MRI scans, and cameras into his body. Doctors concluded that Jason was not suffering from cancer, which Dean says was a 'relief'.
He 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." However, medics were concerned his immune system was attacking his body.
Jason was then diagnosed with Anti-MDA5 Dermatomyositis and was put on 16 different drugs and steroids to try and stop the condition attacking his immune system. Dean says it was a significant blow when they were told the news.
He added: "The prognosis is very bleak because it is so rare they don't know how to treat it, its just a case of dealing with other specialists. Its a game of trial and error."
The 30-year-old then underwent 12 plasma exchanges while in hospital and two rounds of chemotherapy. Despite undergoing several versions of treatment his family were called on New Years Day to say that he had deteriorated so much he wouldn't survive.
Dean said: "He was going to die so made the decision to not make him suffer anymore, he passed away in about 10 minutes of his oxygen being removed. It was awful be 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."
Dean says his family were rocked by the death and he is now desperate to campaign for awareness of the disorder. He said: "I'm wanting to make people aware, we want to know why this wasn't picked up earlier?
"And to raise awareness so people know about it - so people know and read up about it, it took Jason so quick. Had no trouble with his breathing but then it had ripped his lungs to bits to the point he couldn't be off oxygen at all.
"He went from 13 stone to just under six when he passed away. Its very scary, I cant believe it took him, five and a half weeks ago he wasn't that bad and then they couldn't save him - we just want to raise awareness.
"I cant get over it and my wife is devastated, she can't stop crying. It was such a relief when he didn't have cancer, then to find out it was something they couldn't fix - there has been no survivors from it and its so rapid they don't have time to treat it.
"Its a game of trail and error, the next person who has it they will test drugs on them to see what works. Its horrendous to watch someone deteriorate so fast especially at such a young age."
Dean says his daughter and Jason's wife, Jade, has been left lost following the demise of her beloved partner. He added: "Jason had been with my daughter, Jade, who is 29 since they were 15. My daughter is devastated, Jason is all she has known, they have been together their whole adult life.
"They didn't get married, they had no plans to because they were happy, he had lived with us for 8 years, they moved out and started to rent 2 years ago and had plans to buy their first home."
He 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 loose Jason at such a young age."
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