12:54PM, Wednesday 29 April 2020
Amelia (second from left) with her sister Madeline (left), brother Lucas, father Leighton and mother Suzanna.
A father from Marlow has told of his daughter’s agonising wait for a crucial operation which has been halted by the coronavirus pandemic.
Amelia Jones, 17, is missing the top of her skull following emergency surgery she had after collapsing with a brain haemorrhage on January 3 this year.
The procedure – called a craniotomy – has resulted in Amelia developing a syndrome affecting her motor and cognitive abilities, called syndrome of the trephined.
This condition only affects patients who have had a large piece of their skull removed.
The only cure is an operation to have the skull replaced - a cranioplasty – but the procedure is defined as ‘elective’ by the NHS and in the ongoing COVID-19 pandemic, elective operations have been suspended.
Dad Leighton, from Hillfarm Road, and wife Suzanna, were both called in to say ‘goodbye’ at John Radcliffe Hospital in Oxford after Ameila collapsed.
She is now isolated at a rehab room where only her mum can visit, communicating with her dad and two siblings – Madeline, 16, and Lucas, 10 – via an app.
To prevent further damage Amelia has to lie flat on her back and communicates only through sign language.
A JustGiving page has been set up to help fund the youngster’s rehabilitation following her injury and at the time of writing, had smashed its £5,000 target – raising more than £33,000.
Leighton, director of rugby at Marlow Rugby Club, said: "We are not alone in facing the predicament that Amelia faces.
“On Amelia's ward there are other patients facing the same impasse - unable to move forward and at risk of permanent damage without surgery.
“Everyone is overwhelmed with COVID-19 and in the meantime our daughter has this extra complication and is struggling very much so.
“Amelia has a long way to go, but without this cranioplasty she can’t start it properly.
“She is 17, she has got everything in front of her. What happened to her is no-one’s fault.”
He added: “This is not a criticism of the NHS. They have not said no, they just said they are blocked by bureaucracy.
“I do not think people realise how good the NHS are.”
At one stage, Amelia – part of the Great Marlow School rowing squad – was given a 24 per cent chance of survival by doctors.
Leighton described why her crowdfund is called ‘Amelia’s Defiance Fund’.
“She defiantly will not listen to statistics. Every step she takes defies what logic should be against her,” he said.
Leighton added he has written to his local Tory MP for Wycombe, Steve Baker, adding his ‘support has been good’.
At Monday’s daily press briefing in Downing Street, Health Secretary Matt Hancock announced the ‘restoration of other NHS services’ this week – starting with the most urgent, like cancer care and mental health support.
The restoration will be determined by local circumstances, he added.
But Amelia’s family had not heard anything about whether her surgery would be included in this.
To donate to Amelia’s JustGiving page, visit justgiving.com/crowdfunding/lv-jones
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