The family of a desperately ill teenager are trying to raise £130,000 so she can undergo life-saving surgery which can only be carried out overseas.
Ylena Green is the victim of pain so severe that she has been virtually bed-bound for the last few months.
The 18-year-old suffers from a connective tissue disorder called Ehlers Danlos Syndrome (EDS) which leads to painful dislocations in all her joints and even affects her digestive system.
Ylena seemed to be a healthy child until the age of 12 when she started to have dislocations of her knees, wrists and hips because EDS affects collagen – the body’s ‘glue’.
Over the next couple of years she started to have dizzy spells, fatigue and nausea. Her symptoms got steadily worse until her first major downturn in July 2014 when she collapsed and was admitted to hospital.
Frequent ‘infections’ finally settled down and last year, with the help of a motorised wheelchair, was able to go to Sussex Downs College in Lewes – with the ambition of becoming a doctor.
But in February this year, Ylena’s pain became so severe it has left her virtually bed-bound. Unable to lie flat on her back, she grabs what sleep she can lying on her side, on a stack of pillows. She now has a power-assisted bed that helps her sit up.
She needs almost constant nursing by her mum Letitia and really only ‘gets out’ for essential hospital appointments.
Her father Martin Green said: “Moving is so painful for her that I have to lift her into her motorised wheelchair. Every trip ‘wipes her out’ and she can’t wait to get back home.
“An ‘upright MRI’ scan in August revealed the cause of her extreme neck and back pain as EDS related cranial, neck and spinal instability. This means her neck painfully dislocates at the slightest movement. She is already starting to have intermittent loss of feeling in her hands and legs. Left untreated it could lead to paralysis and even death.
“Unfortunately the specialist treatment she needs is not available in the UK (NHS or private) and neurosurgery in Spain or the US is Ylena’s only option. We are desperately trying to raise around £130,000 through children’s charity ‘Just4children’ to get her the treatment she needs.”
Ylena, formerly of Seaford but now living in South Road, Wivelsfield Green, is understandably nervous. She said: “The thought of the operation is quite scary, but I’m hoping it will mean I can get back to doing some of the normal things I used to do.”
Mr Green added: “Ylena tries to put on a brave face, but the heartbreak of seeing her in pain every day is very hard for us.”
To make a donation towards Ylena’s treatment, please visit: http://just4children.org/children-helped2017/helping-ylena-lucy, or by post to: Just4Children, 85 Prince of Wales Road, Norwich, Norfolk NR1 1DG (cheques payable to ‘Just4Children – please write ‘For Ylena Lucy’ on the back of the cheque).