I feel incredibly lucky and I can’t believe I’m here

A WOMAN who was taken to heart by the people of Swindon is enjoying “just being a mum again” as she continues to make a miraculous recovery from pioneering neurosurgery which prevented her from becoming paralysed.

“It’s great to be a normal family, I’ve never felt happier about listening to my boys bicker!” said Jessica Kill, 39, who used to live in Cricklade.

She says she is still “on a high” after the success of the complex operation, called Posterior Fossa Decompression, which takes pressure off the brain stem by fusing the neck and skull. She suffered from life-threatening Craniocervical instability, a condition related to Ehlers-Danlos Syndrome (EDS).

Jessica was finally diagnosed with EDS five years ago after decades of being in the dark about the chronic pain and baffling symptoms she had suffered since childhood. EDS is a genetic connective tissue disorder which affects the collagen tissues within the body, causing dislocation of joints and a range of other debilitating conditions including heart and digestive problems.

Jessica was in constant pain but, as a single mum, she was able to remain largely independent and had a full-time job. This all changed last year when she was diagnosed with Craniocervical instability, which is related to EDS and occurs in one in 15 sufferers. She was told she had approximately three months before she became paralysed.

The complex surgery to prevent this was only available in the USA, and so began Jessica’s desperate bid to raise £180,000 to pay for it. Hundreds of people, the majority from the Swindon area, responded to her appeal, raising the money within three months. She flew to New York and had the operation on August 10 last year, just in the nick of time.

Her consultant, Dr Paolo Bolognese, told her the skull compression was squeezing one of the main nerves controlling her breathing and her heart, and she “wouldn’t have lasted long” without surgery.

“It was very difficult to make the flight to the USA for surgery; just a week or so later and I would have needed an ambulance flight,” said Jessica, who now lives in Birmingham with her two sons Louis, 17, and Finley, nine. “But when you know your life is on the line you just do it. I knew I had to get there, and I had to deal with the pain.”

But she wasn’t frightened. “I went into theatre thinking this is my chance, and I was more than prepared to take the risk, I had no future without it.”

She returned home five weeks after surgery and had to deal “with a few hiccups”, as she put it, over the next few months including chronic nausea and gastritis due to the medication she needed post-surgery. She has permanent damage to the left side of her body, affecting her arm and hand, and a speech impediment because the nerves in a portion of her tongue have been permanently damaged, but she remains positive.

“This is small fry in the scheme of things – I can take all that!” she grinned. “It still hasn’t sunk in that the surgery went well and I have a second chance – it almost seems like I watched an awful film. I do feel incredibly lucky and I can’t believe I’m here, I’m alive and I’m getting better, not getting worse.”

And she says she is indebted to all the people who helped to raise the money to send her for the life-changing surgery in New York.

“It is all thanks to the people of Cricklade and Swindon, and my old school, Bradon Forest – everyone came together to do this,” she emphasised. “You hear too much bad news, it is stories like mine that show that people are amazing. I have a new life and a new future thanks to the generosity of a lot of amazing people, mainly strangers, and it is truly humbling.”

She says she couldn’t have coped without the love and support of her family and friends including the ‘tag team’ who accompanied her through surgery and recovery in the USA - her parents Richard Kill and Amanda Kill-Dalgleish, her sister Emma Haye, who set up a sponsored cycle ride to boost Jessica’s surgery appeal, and school friend Sam Anderson, from Cricklade, who organised a ball which raised £25,000.

Since returning home in September Jessica has been notching up milestones on her recovery journey. After three months of rest and recuperation the surgical collar which she had been wearing for nine months was removed, she started physiotherapy, and is now able to drive again. The next big step is returning to work, and if all goes well she will be back as a project manager with caterpillar plant distributors Finning UK Ltd in Birmingham by April.

“I hadn’t driven since April last year and it is just indescribable to have that level of independence again,” Jessica revealed.

“The physiotherapy has enabled me to build up my strength too and I have gone from needing a wheelchair to walking with two sticks, then one stick, and now I walk unaided.”

And it is the simple things in life that Jessica is relishing.

“I am enjoying being a mum and everything that comes with it – all the mum duties, cooking, cleaning, shopping, and being a taxi service,” she smiled.

“And we have days out – wonderful days out, going for walks and simple stuff we haven’t been able to do for a very long time. Because of my condition we used to spend family time in front of the TV watching films, but now we can get out and about.

“Mind you, with so much metalwork in my head and neck it conducts the cold and makes my muscles spasm, so I have an assortment of silly hats that I put on, which makes the boys laugh!”

At Easter she is taking her sons on holiday to Coverack in Cornwall.

“It’s near the south-west coastal path and I am hoping to get up on those cliffs, look out to sea, and know that everything is okay with my world.”

As a “huge music fan” Jessica is delighted she can listen to music again too. Before her operation she had severe tinnitus and any loud noise, or music, made it worse.

“Louis and I went to a concert by The Cinematic Orchestra, and it was brilliant,” she said.

“Not much gets me down these days. As a single mum I didn’t have much of a social life before the operation, just going to work and looking after my boys, but I am hoping to get a social life again one day and, yes, maybe meet that special person.”

When I spoke to Jessica she was preparing for her next big hurdle, a private post-operative upright MRI scan to assess her progress.

She explained: “I then have to send the scans to my consultant in the USA and, on March 20, I will have a Skype consultation with him – I am hoping it will all be fine and I won’t need to return to the States again for further treatment.”

Posterior Fossa Decompression surgery has been performed in the USA for many years, but is not available on the NHS in the UK for patients that also have EDS, which is something that Jessica and others are campaigning and lobbying to change. She currently knows of nine other people in the UK who are fundraising to have the operation in America, but there has been some good news in recent months in that a surgeon in Barcelona has started to do the surgery too.