Life Saving Surgery for Melody

I’d like to introduce you to my wife, the mother to our two wonderful boys, and the love of my life, Melody Wakelin. She used to be a creative, adventurous, fit, and fun-loving person, who loved helping people, going to the gym, and spending as much time as she could doing all kinds of things with the boys.

She survived a hard start in life, having no real stability in her early life and teenage years. But she managed to turn it around and while we may not have everything, together, our little family has everything we could ever want.

We did, however, until 2017, when everything changed for the worse. Shortly after competing in a body-building competition (coming 2nd in the transformation category) something changed, and what is probably one of the most frustrating parts of this ordeal, we cannot pinpoint exactly what caused this change. What we do know, is that Melody was born with a lifelong condition called Ehlers Danlos Syndrome, and this is an important factor in both her illness, and her required treatment. Ehlers Danlos Syndrome is a genetic connective tissue disorder, where faulty collagen production means the ligaments around joints can become lax and allow bones to either dislocate or subluxate.

So, in 2017 we started on the journey of trying to find out what was causing Melody’s symptoms. Some of the issues that Melody has been experiencing include: Severe Brain Fog, 24/7 Head pressure, Tremors, Irregular and erratic changes to both her heart rate and blood pressure, short term memory problems, dystonic muscle spasms that make it look as if she is having a stroke, Speech, Vision, and Hearing problems, and Intolerance to remaining in an upright position. This is just a handful of near 50 symptoms she is experiencing.

We went to countless appointments with consultants of all various specialities (ENT’s, Neurologists, Neurosurgeons, Spinal surgeons, Vascular surgeons, Orthopaedic surgeons, Rheumatologists, etc), visited several physios and chiropractors, all of which were in various towns and cities across the UK. Not only had we driven thousands of miles, but we have spent what little money we had saved in private medical appointments just trying to find that one specialist who could at least provide some insight into what was going on – and how she could get better.

Along with the specialist visits, there has been hundreds of GP appointments, dozens of scans (including one scan where she went into anaphylactic shock due to a reaction to MRI contrast dye), and numerous visits to A&E over the years when the symptoms had become just too unbearable to cope with – including a trip to A&E on Christmas day in 2021.

During this time, what we found to be the biggest issue was none of the Doctors took a moment to step back and view the symptoms wholistically. We had many Doctors diagnosing her symptoms as syndromes, and trying to provide treatment plans based upon the syndromes. Whilst the diagnosing some of the syndromes was not technically wrong (as she is suffering with these problems), they didn’t help with finding the overall problem.

We also had our fair share of doctors who tried to dismiss what Melody was going through, saying she was either making it up for attention, saying her symptoms was her brain making things up she wasn’t experiencing, and even suggesting her symptoms would disappear when she was distracted.

There was the occasional glimmer of hope with some of the specialists, where they were very confident in their prognosis, they knew exactly where to send her and for what tests. But each and every time, when scans were completed or blood tests were completed and they were “all clear”, the hope faded, and we were left at square one, not knowing where to go, who to talk to, and no end in sight to the hell she was living every day.

And of course, as the days, weeks, months, and years went by, Melody’s symptoms progressed. She had to give up working, give up going to the gym, and now we are at a point where she cannot even take our boys to school, and she spends the majority of her day laying down. When she does manage to muster up the energy and we do manage to get outside, there is always a fear that she cannot get very far, and most time outside is cut short due to her symptoms coming on. This, of course, has led to her gaining weight, and now a favourite excuse of some doctors is her symptoms are being caused by her weight.

While we were visiting all the various medical professionals, Melody spent countless hours on community forums and message boards, reading medical papers, and even reviewing her own scans and medical notes trying to find what the cause of all these problems may be. And it was through this work where she found a glimmer of hope – but she needed to go to Barcelona to see a doctor.

With help from her Mother, she managed to get an appointment in September 2023. They flew out to Barcelona, and after spending over 4 hours having scans in various positions, we had a diagnosis (two in fact); Atlantoaxial instability (with borderline Cervical instability) and Occult Tethered Cord Syndrome.

Atlantoaxial instability (AAI) is where the atlas bone, which sits between the base of your skull and 1st cervical vertebrae is unstable and can dislocate (note the earlier mention of EDS and bones dislocating). As you can imagine, at that junction in your neck, there are numerous nerve roots and blood vessels. As the atlas dislocates, it crushes the nerves and blood vessels, causing all kinds of havoc with both the head and any part of the nervous system that is connected to the nerves affected. What is most concerning with the AAI is that it causes compression on the brain stem, and she is at risk of the brain stem being completely crushed and becoming internally decapitated if she suffers a bump to the head or a sudden neck movement. Tethered Cord Syndrome (TCS) is where the base of the spinal cord tethers itself to the other parts of the spinal column, again crushing and disturbing nerves, causing problems with neurological function in the legs and with both bowel and urinary function. Both AAI and TCS are conditions that are found together, and if one is left untreated it often causes the other symptom.

Now, I can hear you asking, why does Melody need to go to Spain, surely the NHS (or even private doctors in the UK) can deal with this issue. Firstly, these conditions aren’t recognised by the NHS – some of the symptoms are (and practically brushed off as “pinched nerves”), but that is only part of the equation, and we had seen some of the top consultants (including neurologists and neurosurgeons) in the UK, none who even came close to this diagnosis or recommending treatment that would treat these conditions. Second, not only is doctor in Barcelona one of the world’s best spinal surgeons, but he is one of a handful of specialists in the world who has the specialist knowledge, expertise, and experience with this surgery, with people who have EDS, and the complex needs that Melody has as a result of her conditions – and the other specialists neither work for the NHS nor in the UK.

What needs to be pointed out now, is that to fix both conditions requires two different surgeries that cannot be performed at the same time. This means two trips to Barcelona (including staying local to the hospital when being discharged for two weeks for post operative care) and two sets of medical flights back to the UK from Spain.

Watching Melody deteriorate over last 6 years has been heart-breaking. Watching her go from fit, healthy, and fun, to no not being able to stand (or sometimes even sit) upright and basically become a prisoner of our own home is devastating. Even the daily tasks that may seem insignificant to you and I (driving a car, going to the shop for a few items, taking a walk) are now impossible. One of the things she says she misses the most is the school run – something so simple as being able just to take our boys to school, telling them she loves them and to have a nice day as they walk off towards the school gates, has now all been taken away from her because her body has just started failing. If she is left untreated, her symptoms will progress, and she will eventually suffer paralysis and most likely death.

As of right now, she is having to wear a neck brace which only provides mild relief from symptoms – but she cannot wear it all the time as that would make her condition worse, and she has deteriorated to the point where she needs a wheelchair to be able to get around and actually get to see the outdoors for any length of time and try to not miss any more of our boy’s growing up.

The whole time she has been deteriorating, we have been trying to maintain hope that someone, somewhere is able to give her the help she needs, and trying to maintain this after every appointment that leads to another dead end, and seeing her cry in pain has been the hardest thing to endure; but I am remaining hopeful, and I ask you all, if you have anything to give, please donate towards saving Melody and giving her back the life she deserves. If you cannot donate, please share and spread this campaign as far as possible.