A FAMILY is facing a desperate race against time to raise money for life-saving surgery for their teenage daughter.
Ylena Green, 18, suffers from a rare, genetic disorder which means her neck could dislocate with the slightest movement. Left untreated it could lead to paralysis or death.
There are only two people in the world who are qualified to perform the neurosurgery which could save Ylena's life; Dr. Vicenç Gilete, based in Barcelona and another specialist in Washington, DC.
The surgery has an 80-90% success rate but her parents, Letitia and Martin, both 58, must raise £90,000 for the procedure and associated costs and time is running out.
Doctors have said that without surgery, and soon, Ylena could die within a year or two.
Ylena was diagnosed with Ehlers-Danlos Syndrome at the age of 14, a group of disorders affecting the connective tissues.
Her body only makes a fifth of the required collagen, the glue which holds the joints together.
It means her bones can dislocate at any time, causing her extreme pain. The teenager's condition deteriorated sharply in February and she is now bed-bound and requires 24-hour care.
Ylena mother Letitia, who is originally from Banavie, in Lochaber, in the Scottish highlands, said: "Ylena only has 20% of the collagen that she should have in her body.
"It makes all the muscles and tendons loose which causes all the bones to slip in and out.
"She has always dislocated various limbs; her shoulders, her knees, all her digits come out. It's incredibly painful for her.
"It also affects her gut and she can't eat. She hasn't eaten properly since Christmas day 2014 and is fed through a tube.
"Not everyone gets it as bad as this, to the point where you can't even eat.
"In February there was a turn for the worse. She started to get severe pain in her neck and back, so bad that we couldn't get her out of bed and she's been there ever since.
"An MRI scan showed her cervical spine is so loose she has dislocated the axial area for turning your head.
"We have been told that she has tethered the spinal cord as well.
"She can't stand up any more, she has to be lifted. She is at risk of a stroke and death actually. If it dislocates she would start to fit. Basically you are decapitated.
"She's now got a collar that she has to wear to hold it in place.
"There is nobody in the NHS that can help, that was the biggest horror that we found out.
"The surgery (in Spain) has a fantastic success rate but we have to raise £90,000.
"The longer she waits the worse it will get.
"Without it, it will progress and the surgeons has said that within a year she will more than likely be fitting.
"As it is, they don't think she will be able to travel to Barcelona on a normal flight, it will have to be by air ambulance."
Ehlers-Danlos Syndrome affects one person in 5000, globally.
Ylena seemed healthy until, aged 12, she started suffering regular dislocations of her knees, wrists and hips.
Dizzy spells, fatigue and nausea followed, getting steadily worse until she collapsed and was admitted to a children’s hospital.
Moving is so painful, now, she needs lifting into her wheelchair and only leaves her home for essential appointments.
Despite suffering agonising pain, Ylena, gained four B passes in her GCSE exams this year, at the family home in Sussex, with an invigilator by her bedside, and hopes to fulfil her dream of becoming a doctor.
Letitia said: "She's very brave, our Ylena but it must be getting her down now. She's been lying in bed since the end of February.
"She had missed her GCSEs for two years but this year she said, I can't miss it again. We have to find a way. She took her exams at exactly the same time as everyone else.
"She did really well, she got four B-plusses and we are so proud. She will be disappointed she didn't get As, though. She's a smart girl.
"We are hoping this operation will help Ylena, regain a decent level of function."
To donate to Ylena's fund, go to www.just4children.org/children-helped2017/helping-ylena-lucy/
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