Shona was like many normal children when growing up - full of life and vitality and always doing something. She left school and worked for a while before going to University. After a couple of years, she suddenly went down with severe tiredness and exhaustion. That was over 6 years ago. Since then she has had many different diagnoses, including EDS (Ehlers-Danlos Syndrome), Chronic Fatigue Syndrome, ME (Myalgic Encephalomyelitis), Fibromyalgia and several others. Her daily life now consists of sleeping at night, waking up and being given breakfast, before staggering to the sofa for another sleep. She easily sleeps 18 hours in a day, but wakes up without feeling refreshed. She doesn't have the energy to hold and drink a cup of tea - everything is drunk through a straw so she doesn't have to hold the cup or bottle. There are times she needs spoon feeding and her teeth cleaning as she has so little energy. Even eating food uses her energy resources, so she needs to sleep after eating. And I mean sleep. A dinner normally ends with a 3 or 4 hour sleep. My wife is full time carer for Shona now. A visit to the Doctor is often the highlight of Shona's week; it sometimes being the only time in a week that she ventures out of the house. She is on many different medications, but they are only to control some of her symptoms - none of them attempt to repair the issues. I took the cover photo on a lovely sunny afternoon when anyone else would have been outdoors enjoying life. But Shona slept the afternoon away, the same as so many others in the last few years.

There is hope, though. Online friends in medical groups suggested a new route to try. To this end, we took Shona to a facility in London that takes MRI scans when the patient is upright, with the spine / neck in different attitudes. The results of this were sent to a Neurosurgeon in Spain that specialises in spinal fusion for EDS patients, Dr. Gilete . He opined that Shona's spine is misaligned and recommended she visit his clinic in Barcelona . We took Shona to his clinic, and he confirmed her spine is twisted and the top vertebrae are unstable and crushing the Spinal cord and Jugular vein, resulting in the majority of her symptoms. The likelihood is Shona does not actually have ME/CFS, but the crushing causes similar symptoms. The condition is known as Cranio Cervical Instability . Unfortunately, the NHS do not perform surgery for this condition in patients with EDS - it can generally only be done by a couple of specialist Neurosurgeons such as Dr. Gilete and Dr. Henderson who works in the USA.

Dr. Gilete and his team have had some spectacular success stories in these types of operation (Surgical routine ), resulting in life-changing outcomes for patients. One example is a lady called Karen Scott who underwent her surgery recently, and was able to walk again for the first time in several years (Karen Scott - (scroll to June 3))

The operation to fix the top few vertebrae to the skull takes a highly skilled team time to perform, and recovery from the operation requires 4 - 6 weeks in the facility in Barcelona before being able to travel home to continue the recovery. As you can imagine, this operation is not cheap, and the £50,000 price tag does not cover flights or accommodation during pre-surgery preparation days. To this end, we are looking to ordinary people to help us fund this operation and give Shona a life - a normal life that doesn't include a mobility scooter, lightweight cutlery, straws for every drink etc.

A small donation from you can really help to change Shona's life