I spent a decade in bed!
One day soon, I know I’ll be back on my feet
My first clear memory stays with me to this day.
Running in the playground, aged 5, I tripped and fell. Not unusual for a kid – but, looking down, there was blood everywhere. My left leg had burst open. I was rushed to the RVI Burns Unit in Newcastle, where I needed plastic surgery to repair the damage.
While it was my first memory, it wasn’t my first hospital visit. And it certainly wouldn’t be my last...
At 3, I’d been diagnosed with Ehlers-danlos syndrome, a rare genetic condition that affects connective tissue. It cause my joints to dislocate, my skin was thin, prone to splitting.
My mum Molly was vigilant, but couldn’t prevent every accident.
When I was 9, out of the blue, the L4 and L5 vertebrae in my lower back slipped out of place.
I couldn’t stand or walk. In class, I had to lie on the floor on a mattress. I wasn’t teased – everyone understood I was different.
A year later, doctors fused my L4 and L5 together with bone from my hip.
But, at 13, I fell and more vertebrae dislocated.
I was in agony, and Mum had to pop my spine back into place.
My hips dislocated, so I spent over six months in hospital. I was in traction – weights were hung from me using screws to help keep my hips in joint.
By the time I was discharged, I had to leave mainstream school. I joined a special school, where I spent every lesson in a stretcher.
After going private, we found a surgeon in Cambridge who said he could help.
I had an op to have my hip cartilage reshaped to prevent it dislocating again.
Yet vertebrae on opposite sides of where it’d been fused dislocated, again and again.
Mum had to pop my spine back into place all the time. Doctors weren’t willing to fuse my entire spine, though. ‘You’d be disabled for life,’ they said. ‘I am already!’ I cried. I was bedridden, could only sit up for short times, and needed strong painkillers. Every day was a challenge. Still, I knuckled down at school and came out with GCSES and three A-levels. ‘I’m so proud,’ Mum said when I went to Newcastle U University to s study Biology. I was fascinated b by science after y years in and out o of hospital. Determined, I got about in a wheelchair. ‘What h happened to you?’ s students asked in freshers’ week. I spared them th the gory details a and made up a story. ‘I fell off a an elephant ca called Nelly in Thailand,’ I grinned. Soon, people w were singing NellyN the
ElephantE to me – I hadn’t lost m my sense of h humour, that’s fo for sure! Soon, I could on only sit up fo for an hour, c couldn’t take
In class, I had to lie on the floor on a mattress
notes in class as my thumbs dislocated, and had to use a scribe.
Next, my left knee dislocated. Then my back, and my neck.
I needed more surgery, missed more lectures. I did all my work from my stretcher, including exams.
One day, in 2015, I sat up to go to the toilet, felt a searing pain, and blacked out.
I’d suffered a seizure. From then on, every time I sat up or jerked my head, I had another seizure. Doctors couldn’t work out what was causing them.
Soon, I was having 40 a day. Desperate to find out why, I came across craniocervical instability online.
Turns out my skull was dislocating entirely from my neck and spine, compressing my brain stem. My skull and neck could collapse, leaving me brain dead. Imagine a pumpkin on a toothpick..! But doctors couldn’t give me a diagnosis – it meant sitting up in an MRI, moving my neck. I tried and failed. Desperate, I contacted specialists all over the world. One in Spain could help, though surgery cost £80,000, and I’d need an air ambulance and accommodation, at £150,000.
But it was my only hope.
I set up fundraising page: Melanie’s Mission to Live.
This February, I threw a fancy ball that raised £6,000. Local schools and theatres helped, too, hosting shows.
By May, I’d raised enough to be flown to Barcelona...
After a tricky X-ray, my surgeon looked shocked.
‘Yours is the worst case in the world,’ he said.
But he thought he could help – and, the next week, surgeons fused my spine to my neck.
I wore a neck brace for three weeks, until another op. Then I had my entire vertebrae fused together, apart from a small section near my ribs.
After the 10-hour op, I was in a coma for a day. Coming to, I felt the difference at once. I could sit up, move my head.
I couldn’t stop crying and laughing. Finally, I was free to live my life!
After two weeks in recovery in hospital, and another two in a Spanish apartment, I flew home and started physio.
Hopefully, I’ll be able to walk again! I’ve barely been upright since I was a teenager, have spent most of my 20s in bed.
Now, I cherish each day. Mum’s been my rock, caring for me 24/7, and its cost her a fortune.
I’m still fundraising to help cover the cost of getting back on my feet. And now I’m supporting other families going through the same thing. I’ve still got a long way to go. But I’m finally heading in the right direction.