You may of heard of Nadine over the past few months as "The Girl with the Wobbly Head" She has been on BBC news, MK Citizen and on a lot of social media sites. Nadine is a great family friend and it's a pleasure for us to be trying to raise money for her life saving surgery that she so desparately needs. She is one of the most positive people I know and I'm gutted that her condition is now so serious that if left untreated, it will kill her. We need to raise £110,000 to fund the surgery in America and will be eternally grateful to anyone who is able to sponsor this bike ride from Milton Keynes to Wimbledon on 22nd May - so we can get her wobbly head fixed and her life back!!

A few years ago Nadine had a serious accident and since then has suffered life altering neurological symptoms which are getting worse and worse as the weeks go by. She has seen many specialists from many different areas of medicine in this country but none of them were able to give her a diagnosis.

It’s only through her own persistence and research she came across a condition called Elhers Danlos Syndrome or EDS for short. EDS is a rare genetic condition which affects the connective tissue in the body meaning that the joints have hypermobility – more flexible, and hyper extensibility of the skin so it is thinner, stretchy, and bruises much easier, it’s very fragile and takes longer to heal when it is cut or torn. Basically, EDS causes the glue which holds everything in place to be too flexible and stretchy.

Neurosurgeons in the UK don’t have the expertise to treat EDS, so she worked hard to find out who can and ended up flying to America to see one of the top neurosurgeons who has experience with the condition. Finally, she was going to get some answers as to what was going on, but the diagnosis was devastating.

Due to Nadine’s EDS her accident has caused Cranial Cervical Instability (CCI) which means her skull is not fully attached to her neck or supported properly. It’s so loose that she risks spinal cord damage and death from internal decapitation and because the skull is not supported properly, the weight of it is crushing her brain stem which is the main phone line between the brain and the rest of the body, it regulates life sustaining functions such as breathing, swallowing, heart rate and blood pressure.

To make it worse, the top two bones beneath the skull were dangerously loose too. The C1 & C2 vertebrae are moving so much when Nadine turns her head that they are only millimetres away from dislocation. Known as Atlantoaxial Instability (AAI) this excessive movement is causing the blood supply from the vertebral arteries to be cut off when she turns her head.

Everyday she risks being paralysed due to her spinal cord being squashed by the moving bones, which are normally held in place by the ligaments. Imagine getting in the car to travel to see friends knowing that bumping over a small pothole in the road could cause you to be in hospital for days on morphine for the pain, or even something as simple as your pillow in bed being a little too high could dislocate your head and neck and kill you.

To stabilise her condition Nadine needs life saving fusion surgery, the neurosurgeon has a surgical plan to do one life saving surgery with the possibility of a second if needed, the surgery has a 95 percent success rate.

She was devastated not only at the diagnosis but also at learning the treatment is not available in the UK and costs a small fortune in America.

Without this surgery in America Nadine’s condition will get worse and worse until she dies, although it’s not possible to say how long it will take she has progressively got worse over the past six months with it now affecting the signals that control her heart rate. The longer she goes without treatment the more damage is being done to her brain stem, time is running out for Nadine as the symptoms get worse each day.

Nadine often seems healthy to the outside world because of the invisible nature of this condition. She battles everyday with the symptoms caused by the EDS, CCI and AAI, most people have a cup of tea and toast for breakfast, but Nadine needs a cocktail of different medicine just to get up in the mornings.

When she has an attack and the symptoms flare up the only thing that stops the agony is morphine and bed rest. The pain in the back of her head and neck is so bad she slips in and out of consciousness, she loses feeling in her face and tongue, and despite the beta blockers her blood pressure soars, she can’t swallow properly either and the only thing that A&E can do is try to keep her comfortable.

We can’t fix Nadine or solve this problem; neither can the surgeons in the UK BUT WE CAN DO ALL WE CAN TO HELP RAISE FUNDS FOR HER!