A family from Wivelsfield Green are looking to raise £90,000 to help their teenage daughter to get life-altering surgery in Spain.
Ylena Lucy Green, 18, is virtually bed-ridden from Ehlers Danlos Syndrome (EDS), which is an extremely rare genetic disorder.
The syndrome affects collagen – the body’s glue and if left untreated, the syndrome can cause paralysis and even death.
Ylena’s neck dislocates at the slightest movement and she is beginning to lose sensation in her hands and legs, along with complications to her digestive system.
She took her GCSEs from her bed, invigilated by exam staff, turning her bedroom into a temporary exam area.
There is no current treatment available on the NHS or through private healthcare in the UK, and the family are seeking to travel to Barcelona for neurosurgery by specialist Dr Gilet.
Martin, Ylena’s dad, said:
“The success that Spanish surgeon Dr Gilet has achieved at least gives us hope that Ylena will regain a decent level of function and it’s essential to have something positive to focus on.”
At 12, Ylena was healthy, but symptoms worsened and a recent ‘upright MRI’ scan revealed EDS as the cause of the extreme back and neck pain.
The scans showed severe cranial, neck and spinal instability.
Parents Martin and Letitia are trying to raise around £90,000 through the children’s charity ‘Just4children’ for the specialist neurosurgery, accommodation and flights.
Achieving B grades in her GCSEs, Ylena said she “aims to become a doctor” in the future, inspired by her own life to help others.
To make a donation towards Ylena’s treatment, visit Just4Children.
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