A mum has made a heartfelt plea for help to raise £94,000 to send her teenage daughter overseas for life changing surgery.
It is no ordinary appeal that Janine Gray, 48, has issued on behalf of 18-year-old Ellie, who suffers from Ehlers-Danlos Syndrome (EDS).
For Janine, of Victoria Terrace, East Boldon, has the same debilitating condition – and needs surgery herself.
In a supreme act of parental love, she and husband Neil, 50, have prioritised Ellie for the major operation, which they hope will go ahead in Barcelona later this month.
It will see neurosurgeons fuse her skull to her spine - and operate on the base and possibly middle of her back - to stabilise her head and neck, alleviating her symptoms.
With only around £28,000 so far pledged as part of the Ellie’s Fusion campaign, time is running out to raise the remainder.
Janine, whose condition forced her to give up work as a rheumatologist, said: “We have traveled this awful journey together for six years.
“Unfortunately, the outlook is pretty horrible for Ellie if we can’t do something about this.
“No one has ever told us directly that her condition is life threatening, but surgeons generally do say that it is.”
She added: “In January, she stopped being able to digest food, and we know the longer we leave it, the more irreversible the damage to her will be.
“We don’t have the money yet have paid an £8,000 deposit. If we don’t get the rest, we’ll just have to beg and borrow.”
Ellie was diagnosed with a Chiari malformation, which is a hindbrain hernia, and a cyst on the spine known as syringomyelia at the age of 12.
She underwent major neurosurgery to prevent deterioration of these conditions, which adversely triggered other symptoms.
Four year later, doctors diagnosed EDS, a genetic condition which causes lax ligaments, as the underlying problem.
In her specific case, it has led to her skull slipping down into her brain stem. The many symptoms include severe pain and heart rate fluctuations.
The impact on her life has been dramatic, with the once outgoing and sporty Ellie is now largely restricted to the house.
To prepare for the operation, Ellie has undergone scans and other pre-testing and investigations in the UK to determine the extent of her surgeries.
Surgeons have said they are confident both Ellie and Janine’s quality of life will be much improved by surgery.
Ellie has been supported by a neurosurgeon at Newcastle’s Royal Victoria Infirmary but no UK-based neurosurgeon has the experience of performing the necessary operation.
To help achieve that goal, fundraising events started in June and more are planned to raise the £94,000 needed to pay for her treatment.
Money will be raised from the Great North Run, and Westoe rugby club in South Shields is holding a bucket collection at their home game on Saturday, September 16.
Donations can be made at www.justgiving.com/campaigns/charity/just4children/elliesfusion
More information on her story is at page www.facebook.com/elliesfusion