A YOUNG boy who sadly died after after suffering from mitochondrial disease will be remembered later this month as Festival Place will light up its tower green.
Thomas Stewart Keen was born on December 29, 2020 at Basingstoke hospital weighing a healthy 8lb 13oz. He was a happy boy, developing well.
However in April 2022, Thomas had a seizure which wouldn’t stop. He was transferred from Basingstoke hospital to a specialist children’s hospital, John Radcliffe, in Oxford.
After genetic testing it was confirmed he had POLG, a rare form of mitochondrial disease that had been unknowingly inherited from his parents.
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Thomas’s diagnosis was life-limiting, needing him to be tube fed with an a specialist Keto diet and nine medications 17 times a day.
Sadly, only 10 weeks after his initial symptoms appeared, Thomas reached a stage that he could no longer support himself. He had spent eight of those 10 weeks in hospital.
His parents, Ryan and Hannah Keen, were supported by the medical staff at John Radcliffe when they took the hard decision to withdraw all medical support.
Thomas died peacefully in his parents arms on July 1 at just 18-month-old.
His family are trying create awareness of this rarely understood and often left undiagnosed disease.
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Thomas’s family were supported by The Lily Foundation, who work hard to fund research into Mitochondrial Disease which affects one in 5,000.
Annie Chance, aged 11, Thomas’s cousin, has already undertaken a 300,000 step challenge in August, which she completed and raised over £2,000 for The Lily Foundation.
Also, a 30-mile walk has been planned to support The Lily foundation by Thomas’s Dad and his work colleagues.
On September 24 Festival Place will light up its tower to raise awareness for World Mitochondrial Disease Week.
For more information thelilyfoundation.org.uk/get-involved/world-mitochondrial-disease-week-2022 or to donate justgiving.com/campaign/JoinTeamTommy