Do­na­tions help give Matthew a spe­cial send off

South Wales Echo - - NEWS -

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”.

Newspapers in English

Newspapers from UK

© PressReader. All rights reserved.