Mum and daughter’s race to pay for surgery
PAIR WITH SAME CONDITION NEED LIFE-CHANGING OPS
A MOTHER and daughter left virtually housebound by the same devastating condition are facing a race against time to pay for life-changing surgery.
Ellie Gray was an active 12-yearold who loved school, rode horses and swam three times a week when she was diagnosed with a Chiari malformation, where the lower part of the brain extends into the spinal canal.
The news came just months after her mum Janine was diagnosed with exactly the same condition.
The pair, from East Boldon, South Tyneside, have also now been diagnosed with Ehlers Danlos Syndrome (EDS), a rare condition which causes the joints to dislocate.
The disease is identical to that suffered by Cramlington’s Melanie Hartshorn, 27, who made headlines after recently undergoing surgery in Spain, allowing her to sit up for the first time in years.
The condition can lead to CranioCervical Instability, where the skull is unstable in relation to the neck, often described as being like a pumpkin on a toothpick.
Six years on from the original diagnosis and Janine, 48, says she and her daughter live their lives “between the bed and the sofa” due to the debilitating symptoms.
Janine has been forced to retire early from a career she loved as a doctor of medical statistics at Leeds University. And Ellie, whose symptoms are even worse than her mum’s, lives most of her life lying down to relieve the constant head pain and dizziness.
A further deterioration this year has led to severe gastroparesis, which means she is unable to digest much food and vomits daily.
Now 18, she has watched all her friends finish their A-levels and apply to university, while she has been too ill to attend even one day of school this year.
There are currently no neurosurgeons in the UK who can treat Ellie, but both mother and daughter have been handed a lifeline by surgeons in Barcelona who have agreed to take on their case.
The consensus is that fusion surgery – straightening the brainstem and inserting rods and screws into the skull/upper spine to stabilise the head and neck – can reduce head pain and brainstem symptoms.
And there is a high suspicion that Ellie has her spinal cord tethered at the base of her spine and, if confirmed, will require further surgery.
Because Ellie’s symptoms are worse her surgery has been prioritised, with doctors in Barcelona hoping to operate on her in September.
But the family need £85,000 to pay for Ellie’s surgery and have now launched an online campaign in a bid to help raise funds.
Janine said: “This will be absolutely life-changing – doctors are confident our quality of life will be much better as a result of the surgery and we are optimistic about the future. But without it both of us will continue to deteriorate.”
To help Janine and Ellie go to http://just4children.org/childrenhelped2017/ellies-fusion/