Why Will The NHS Not Fund it ?
The NHS will only fund operations when the risks and benefits have been fully assessed. The operation Jemma needs is a relatively new one being done on patients with EDS. There is an increased risk of complications in people with connective tissue disorders and only a few people from the UK have had the surgery abroad so there isn't enough evidence for them to agree to fund it. Even though the outcomes have been really positive and made a huge difference to quality of life.
What Happens To Your Donation?
Your kind donation goes straight into Just4Childrens fund page for Jemma - Jemma's Life Saving Neurosurgery. There is a Just4Children.org page and a page on Just giving they are both linked so you can donate through either and it goes into her fund. links below.
Once the goal is reached the hospital fees, rehab apartment fees and other related costs will be payed by just4children. Any funds left over will pay for physiotherapy and after care costs.
The surgery she needs is not available in the UK because there are no specialists in her conditions. We have seen lots of neurologists and neurosurgeons and spine surgeons. whom agreed there was problems but said we don't know how to help or we don't deal with Ehlers Danlos patients.
So we had no choice but to seek help from a specialist team of neuro spinal surgeons in Barcelona who opened a clinic especially for EDS, Chiari malformation and spine problems. There is only a few true specialists in the world who deal with these conditions daily, 4 in America and 2 in Barcelona.
Obviously we chose Barcelona because its closer to home and we fully trust the team that are going to help Jemma at the Chiari and hypermobility unit.