The director of the Marlow Rugby Club has opened up about his daughter’s tragic illness, which has seen some of her skull be removed.

Leighton Jones, revealed that his 17-year-old daughter Amelia suffered a brain haemorrhage on January 3 this year after collapsing at home.

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Within hours, she had emergency surgery at the John Radcliffe Hospital in Oxford where after 12 hours of operating and with Amelia in the Intensive Care Unit, doctors released the pressure on her brain as it was too high.

This meant that more surgery was needed and with Amelia’s life in the balance, Leighton and his wife Suzi were twice called in to say their goodbyes.

Thankfully, Amelia, who is part of the very successful Great Marlow School rowing squad, survived and with the four-month anniversary of the tragedy occurring on Sunday, Leighton has opened up about the ordeal.

He said: “A lot has happened mostly for the positive but Amelia has now developed a rare condition called Syndrome of the Trephined (SoT).

“This is a rare condition only affecting patients who have had a significant piece of their skull removed.

“The prognosis for patients with SoT is not good without surgery.

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“It is completely reversible and curable but only with a cranioplasty, skull replacement surgery.

“NHS England has deemed this operation for Amelia to be ‘elective’ and as such have refused permission for the operation to proceed.

“Despite the best efforts of the surgical team and Amelia’s consultant, we are blocked by bureaucracy.

“Last weekend, Suzi and I decided to take on the bureaucracy that is limiting the wonderful clinical team that Amelia has working with her.”

Following the decision, a Just Giving page has been set up to help Amelia.

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Leighton added: “We do this not for financial gain but for our eldest child who has never been fighting alone, but with us and you behind her.

"If we now can help others by bringing this to the public attention, then Amelia’s personal fight will be for the good of all”.

“She is a winner and knows how to stay the course and cross the finish line in front, let’s all support her on this journey.”

“These are the most bizarre days that we are all living through but get through them we will.

“Please keep the positive thoughts and prayers going".

To help Amelia, donate by clicking here.