Blog Spot

The Girl with the Wobbly Head

Nadine’s Fusion Fund

This is Nadine, my best friend, my soul mate, my significant other, and the girl I’m going to grow old with.

She is the most loving, caring and compassionate person I know, always putting others first and genuinely taking the time to listen even when her own world is imploding.

Nadine has a rare and very serious health issue which if left untreated will kill her but not before robbing her of all the things we take for granted every day.

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.

I’m a soldier and have a can-do attitude to everything; it’s how we are trained. If there’s a problem find a solution, if the car is broken take it to a garage, if the sink is blocked get a plumber, if you’re ill go to the doctors, but what happens if the doctors can’t help?

Nadine had a serious accident a few years ago 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.

After more research we discovered that neurosurgeons in the UK don’t have the expertise to treat EDS patients so we found out who can and ended up flying to America to see one of the top neurosurgeons who has experience with the condition.

One upright MRI scan and Digital Motion X-Ray later and we were sat in an office waiting to see the neurosurgeon. Finally, we were 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.

As if that wasn’t bad enough the neurosurgeon went on to say that 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.

We were 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.

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. 

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.

She takes Beta Blockers to regulate her heart rate, Nerve Blockers to dull her pain, tablets to improve balance, anti-sickness drugs, anti-seizure pills, muscle relaxants and three different pain killers to reduce the pain to a manageable level and that’s just on a good day. 

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.

These attacks can be caused by the smallest thing, going over a speedbump or braking harder than normal, the rocking of a train carriage, being accidentally knocked into on a busy street and they can also happen for no reason at all.

It’s heart breaking to watch such a strong person be stripped of her bubbly personality, her hopes and dreams, as the reality of what’s her future holds set’s in.

I can’t fix Nadine or solve this problem; neither can the surgeons in the UK so we have no option but to try to get to America to save her life. Nadine is a very private, proud, hard working girl who would rather go without before asking anything from anyone, but this is one battle we can’t do without your help.

 

SO HOW CAN YOU HELP?

We need to raise £110,000 to fund the surgery in America and will be eternally grateful to anyone who is able to contribute to getting this life saving surgery, even if you can’t donate please take the time share her story so we can get her wobbly head fixed and her life back.

All the funds raised will be used towards travel to the US, hospital and surgical fees and to support Nadine in her recovery. 

A Facebook page has been set up to share the story and spread awareness at

nadines fusion fund.

https://m.facebook.com/NadinesFusionFund/

Any one that wants to help with fundraising or ideas for fundraising please email

nadinesfusionfund@gmail.com

Thank you for sparing a few minutes to read Nadine’s story, and thank you to all our friends and family who have rallied round to support us.

Jamie (Milton Keynes)