I am appealing for your help. Ella suffers from Ehlers Danlos Syndrome, a connective tissue disorder which affects all parts of the body. Unfortunately, this condition has caused severe cranio-cervical instability. This means that the joints at the base of her skull and throughout her cervical spine are partially dis-locating. She is in danger of paralysis and sudden death.

For years she has suffered chronic pain and many injuries due to her condition. There are only two specialist NHS centres in the UK that help EDS patients but they have not been accepting new referrals for at least five years. Since diagnosis of CCI in May this year, she has still not been treated by an NHS specialist. We were also shocked when we found out that the corrective surgery she needs is not available in the UK for people with EDS, nor is it funded by the NHS. Ella will have to travel to the States for the life-saving surgery she needs and this is why we need your help in raising funds to pay for it. The surgery involves fusing her spine from the base of her skull all the way down to the top of her thoracic spine. After surgery, Ella will not be able to move her head at all and will need a lot of support as well as adaptations. Her spine has already been fused in the lower back to correct a scoliosis, so life already has been extremely difficult and painful for our lovely daughter- who had so many plans for her future. She has battled against this debilitating condition for a long time but now, without surgical intervention, her condition will only get worse.

The medical costs and attendant expenses – such as flights, accommodation, medical insurance and post-op’ rehab’ will be, at a conservative estimate, upwards of £120,000. My husband and I will use all our savings towards the costs but will need to raise £40,000 as well to cover the full amount. We would really appreciate your donation towards helping Ella get the surgery she desperately needs.