Ylena, who is 18, suffers from EDS (Ehlers-Danolos Syndrome), POTS (Postural Orthostatic Tachycardia) and Intestinal Failure (fed by TPN – a line going into her heart).

After years of worsening symptoms, an ‘upright MRI scan’ revealed the cause of the extreme neck and back pain that has left her virtually bed-bound for the last six months. The scans revealed sever cranial, neck and spinal instability, meaning her neck dislocates at the slightest movement and she is already starting to experience intermittent loss of feeling in her hands and legs. If 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). Neurosurgery in Spain or the US is Ylena’s only option. Ylena’s parents Letitia and Martin Green are desperately trying to raise £130,000 through children’s charity ‘Just4children’ to get her the life-saving treatment she needs.

The team at Fairfax were so moved by Ylena’s story and immediately got involved by donating £50,000.

Ylena’s Dad Martin said: “Before the group’s first meeting got under way, I was able to share some fantastic news with them. Local property developers Fairfax in nearby Bolney had donated £25,000 earlier that day. This took the fund so far to almost half-way and was an incredible boost to Ylena’s fund and our morale.”

But then last week there were two developments that reflect Ylena’s roller-coaster journey.

Ylena’s mum Letitia said: “Unfortunately, we had a set-back when developments in Ylena’s symptoms indicated a ‘Tethered Spinal Cord’ and she will need more surgery than initially thought. As a consequence, we had to increase Ylena’s fundraising target. The good news is that when Fairfax learned of this, they very generously donated another £25,000! This means we are still over half-way there and very much on course.”

Fairfax Director Jon Ball said: “We try to support local causes and Ylena’s story struck a chord with us. We hope other companies will be able to help and she’ll soon get all the funds she needs.”

Ylena said: “I am so thankful to everyone for all the love and support I’ve had … when I heard about the donation from Fairfax I must admit I got a little tearful. £90,000 seemed such a huge amount to raise, let alone when it became £130,000. Getting over half-way makes the whole thing so much more real. We’ve still got a way to go, but the ‘mountain’ is more of a ‘hill’ now.”

Ylena is an incredible and inspiring young lady and she urgently needs your help. Please support this worthwhile cause and donate what you can to help Ylena get the treatment she so desperately needs.

To read Ylena’s full story and to donate please visit www.justgiving.com/campaigns/charity/just4children/helpingylenalucy