By Hollie Bone
This heart-warming footage shows the moment a mum took her first unaided steps in years thanks to miracle £100K surgery – after a rare condition left her with a ‘bowling ball head on a paper straw neck’.
Gran-of-one Karen Scott, 51, from Hartfield, East Sussex, was born with debilitating disease Ehlers-Danlos Syndrome, which affects the body’s connective tissue and left her spine so weak she couldn’t hold her own head up.
For 30 years the married mum-of-two battled to get a diagnosis for the degenerating symptoms which plagued her life and she was finally forced to retire from her job as a finance director in 2016 aged 48.
But against the odds, after two years confined to a neck brace and wheelchair and another using crutches and a mobility scooter, Karen has been caught on camera taking her first steps.
She paid £100,000 to travel to Barcelona, Spain, for a pioneering eight hour operation in which doctors strengthened her spine using two titanium rods.
Karen said: “Thanks to this surgery, I have walked for the furthest I have walked without any mobility aids for the first time in three years.
“I was overjoyed and overcome with emotion but also shocked that it’s been so successful and had such quick results, I’m elated.
“The surgery will allow me to support my own head properly without it crushing my nerves. I’ve had two ribs taken out to fuse two titanium rods from my head to my thoracic spine.
“Even now I’ve had my operation, I’ll have to wear my neck brace when I’m outside the house or on transport until this has properly fused together but I’m so happy and overwhelmed that I’ve got to this stage and actually had the operation successfully, I feel so lucky.
“I look like I’ve been attacked by a shark, but given the circumstances I feel really good.”
Karen was first diagnosed with Ehlers-Danlos Syndrome and craniocervical instability – a rare genetic condition that’s means she means she could be ‘internally decapitated’ at any time which is caused by Ehlers-Danlos – in June last year.
She knew from a young age something was wrong – and would routinely dislocate her joints – but claims she spent three decades being told by doctors she was ‘crazy’ and was misdiagnosed with Myalgic Encephalomyelitis (ME).
Since the start of this year, Karen has raised the £100,000 needed to go to Centro Medico Teknon in Barcelona, where doctors were prepared to undertake the risky surgery as it is not available to her on the NHS.
She said: “It was only when I got to about 23 I knew something was wrong. I’ve had almost 30 years of doctors saying you’re crazy, there’s nothing wrong.
“The skin came off my hands and feet without any explanation. I could eat something one day and be fine but if I could eat it again the next day and come out in rashes and difficulty swallowing, and then I would suffer fainting and blackouts.
There were various things that were going on, I was developing allergies to lipsticks and other silly things and it was getting harder and harder for me to walk without crutches.
“I worked up until 2016 doing three day weeks as a finance director but in order to do that I was spending the other four days in bed exhausted.
“I had no quality of life and I was beginning to feel scared that I wasn’t just a danger to myself but I was a danger to other people around me.”
As well as taking away her legs, for years the disease robbed Karen of the ability to control her own body, leaving her with uncontrollable shakes, random bouts of sickness and fatigue, and a complete loss of control over her heart rate and temperature.
But post-op, Karen says that many of these symptoms have already disappeared, and despite feeling a bit sore, the brave gran has thanked everyone who supported her along the way.
She said: “I have had a lot of support from lots of different places, I’ve been truly humbled by the support I’ve had from everyone, especially my family, my husband, David, is amazing, he does everything, he’s a superhero.
“There are so many others like me though that are still having to fundraise hundreds of thousands to come and have the same surgery done here in Barcelona or in the USA.
“There needs to be more awareness around Ehlers-Danlos, we need to raise the profile of this illness because it is not rare, there are thousands of people in the same position, who have suffered, not knowing their own disease for a long time.”
An NHS England spokesperson said: “Despite the rarity of Ehlers-Danlos Syndrome, the NHS does fund surgery when it is recommended by clinicians.
“However, the decision to undertake such complex procedures has to be based on whether the benefits to the individual patient outweigh the risks.”