A HEARTBROKEN dad has told how his son-in-law died suddenly on New Year’s Day from an incurable rare disease.
Jason Tolson, 30, had been complaining of muscle aches, hair loss and joint pain and was rapidly losing weight.
He was taken to hospital six weeks ago after his health deteriorated so badly he was left unable to walk.
Tragically he was diagnosed with Anti-MDA5 Dermatomyositis – an auto-immune disease that targets the lungs.
On January 1, his family made the agonising decision to remove the oxygen that was keeping him alive.
Jason’s father-in-law Dean Blakeley has now spoken of his pain following the tragedy.
He told Yorkshire Live: “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.”
Jason first began to feel unwell in May last year with medics eventually running tests after he developed sores on his body.
He underwent numerous CT scans and MRI scans to search for cancer, which doctors believed he had at the time.
After he was admitted to Pontefract hospital, Jason’s family were told he did not have the disease.
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.”
But Jason was transferred to Pinderfields hospital amid fears he could have a problem with his immune system.
While there, the family were dealt the devastating blow he had Anti-MDA5 Dermatomyositis.
The disease is so rare and claims its victims so quickly that no cure has been found.
Dean said: “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.”
Jason was put on 16 different drugs and steroids to try and stop the condition attacking his immune system.
He also had 12 plasma exchanges and two rounds of chemotherapy but his family were tragically told on New Year’s Day he would not survive.
Dean is now sharing Jason’s story in a bid to raise awareness of the killer disease.
said: “It was such a big relief when we knew it wasn’t cancer but then this extremely rare condition has took his life.
“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.”
What is Anti-MDA5 dermatomyositis?
The condition is a rare systemic autoimmune disease.
It is can cause alopecia, arthritis, painful sores, an inflammation of the fatty layer below the skin and an increased risk of inflammation and scarring of the lungs.
The disease is often missed by doctors despite its high mortality rates.
Victims usually die so quickly it is impossible to treat the condition and there is no cure.
Tragically there have been no survivors of the disease.
Dean said the family has been left “devastated” by Jason’s death.
He is now asking for donations on a GoFundMe to help towards Jason’s funeral costs.
Dean added: “Its horrendous to watch someone deteriorate so fast especially at such a young age.
“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.”
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