A teenager has taken her first steps on the road to better health after pulling through a potentially life-changing 13-hour operation in Spain.
But Ellie Gray, 18, may not know for a year if the surgery – unavailable in the UK – has been a success.
Neurosurgeons, who spent twice as long operating on Thursday as expected due to complications, say they cannot be sure of the long-term outcome.
And they have also warned her mum Janine, 48, and dad Neil, 50, who are keeping a bedside vigil at the Barcelona hospital, to expect an initial rough recovery.
So far, they say the operation, to fuse her skull to her spine and relieve the symptoms of the debilitating genetic condition Ehlers-Danlos Syndrome (EDS), went well.
Janine said: “The operation went well but was much more complicated than they anticipated and lasted more than 13 hours.
“We’ve been told to expect a rough recovery for the next week or so. This was major brain surgery and more extensive than any of us was expecting
“We are with Ellie and we’ve been warned it will be rough so obviously we are focussed on her.
“The surgeons seemed happy that they had achieved what they set out to. Ellie is on the intensive care unit and will stay there for the time being.
“Time will tell whether the surgery has been successful, it will take up to a year to fully recover.”
With no UK hospital able to perform the operation, the family sought treatment overseas.
Limited to surgery in the US or Spain, they set about raising £94,000 to cover costs, with £37,900 so far pledged.
To add to the family’s concerns, Janine, a former medical statistician, also suffers from EDS and requires similar treatment.
In attempting to stop her skull slipping onto her brain stem, surgeons found her neck to be more unstable than thought, and they encountered significant scar tissue from previous surgeries.
Her dura – the outer lining of her brain and spine – also proved very fragile and kept springing leaks.
She is expected to be hospital for around 12 days, but her parents have been warned it could be longer.
In total, they say they may have to remain in Spain for a month while she recovers.
Ellie, of East Boldon, was aged 12 when diagnosed with a Chiari malformation, which is a hindbrain hernia, and a cyst on the spine known as syringomyelia.
She underwent major neurosurgery to prevent deterioration of these conditions, which adversely triggered other symptoms.
Four years later, doctors diagnosed EDS, which causes lax ligaments, and she has since suffered rapid health loss.
The impact on her life has been dramatic and she is now largely restricted to the house.
She mixed part-time school and home tuition but has already had to give up on her dream of becoming a vet.
Donations can be made at www.justgiving.com/campaigns/charity/just4children/elliesfusion