Young Keir Platt loses battle against rare genetic disorder
A TEENAGE boy described as a “true fighter” has lost his battle against a rare genetic disorder.
Keir Platt, from Astley Bridge, was diagnosed with metachromatic leukodystrophy (MLD) in 2005 — a condition which affects the nervous system and cannot be cured.
It meant that he lost the ability to walk and talk at an early age.
His parents Michelle Tonge and Martin Platt were told Keir would not reach double figures in age, but, against all odds, he made it to his teenage years.
He died peacefully last Thursday, just two days before his 14th birthday.
Miss Tonge, aged 40, said: “Keir just bought pleasure to everybody around him and he touched many people’s lives.
“We were expecting him to pass away at a young age. It’s strange, even though we knew that, I think we all hoped he would go on forever.
“But Keir had a lot of extra time and we really made the most of it. He came everywhere with us and we did everything together.
“When I look back, I don’t have any regrets because I know Keir did live his life as fully as he could have done. He was always happy and always smiling and just lovely to be around. He was just an amazing person.”
Keir became ill with a chest infection before Christmas, but his condition became much more serious on January 2.
He was admitted to the Royal Bolton Hospital when he started having problems with his heart.
When Keir’s family, including his 16-year-old sister Erin, were told his condition would not improve, they were given consent by doctors to take him home for his final days.
“He was not getting any better and his body was gradually starting to shut down, so we decided to bring him home,” added Miss Tonge.
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“We all stuck together like we always have through it all. We have had some very bad days over the years, but most of all we have some amazing memories.
“We also have lots of videos of Keir doing his favourite things like going for walks with my dad and listening to music.
“We’re lucky enough to have some amazing friends who have been so supportive over the years, and that goes for the staff at the Royal Bolton Hospital too.”
A service of thanksgiving was held in East Lancashire Crematorium in Radcliffe at 1pm yesterday.
The family have asked for donations to be made to either Derian House or The Sycamore Project based in Farnworth.
Read more about Keir here:
- Why 11/1/11 is more than just an 11th birthday to Keir
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- Brave Keir celebrates his teenage milestone
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