Donations help give Matthew a special send off
WHEN Matthew Knowles couldn’t keep his head upright and was struggling to fully open his eyes his mum knew something was wrong.
Just a year after showing the first signs of his symptoms, Matthew was taken to hospital and died weeks later.
The loving and happy 12-year-old who was “a character and always made everyone laugh” was diagnosed with myasthenia gravis – a rare autoimmune condition which affects the nerves and muscles, usually seen in men over 60 and adult women.
The condition affects just 15 in every 10,000 people in the UK.
Matthew’s mum, Tammy Ivey, from Tonyrefail, said: “Doctors kept saying it was fine and they were treating him for chest infections. We were going back and forth to the doctor.
“Then one GP admitted him to the Royal Glamorgan and they did blood tests. They transferred him to the Heath [University Hospital of Wales in Cardiff] with suspected myasthenia gravis and the doctors confirmed it was that.”
Matthew was being fed through a tube and was at the hospital for anout seven weeks.
“He was doing well for a long time,” 34-year-old Tammy said.
“Then the next thing I knew, I was being rushed in to be with him. Doctors were working on him and the next thing he was gone.
“Matthew had a cardiac arrest while he was at the Heath.”
Tammy said she first noticed Matthew wasn’t himself at a family wedding in 2015 and by the end of the year he was having difficulty holding his head straight, his eyes couldn’t open fully and his speech became slurred to the point Tammy couldn’t understand what he was saying towards the end of the day as he was becoming more tired.
But due to the rarity of the condition it is difficult to diagnose, which meant Matthew was being prescribed antibiotics for a suspected chest infection before he was finally referred to hospital for further tests.
Matthew – who had an older brother, Joshua, and a one-year-old brother, Warren – died last month and his school, Porth County Community School, set up a fundraising page to help give him a special send off.
“Matthew was into Doctor Who,” Tammy added. “He had a Doctor Who coffin and the undertaker arranged for his ashes to be in a Doctor Whothemed urn. We had flowers for him in the shape of Dalek.
“Over £3,000 has been raised so far and most of it will go to pay off funeral costs but we’re talking about having whatever’s left over go to the Heath.
“We couldn’t thank people enough for their donations. It made me feel emotional that people liked him enough to do that for him.
“Matthew was a character. He was always in your face, smiling and dancing. He was the type of child where if you were unhappy, he would be making you happy and doing things you couldn’t help but laugh.
“He was such a loving boy and would do anything for you.”
The JustGiving page, set up by Porth County Community School, described Matthew as a “popular, caring and happy young man who loved life”.