Summer Vincent, daughter of Emplas sales director, Jody Vincent, was born with a tumour so rare that it was one of only three recorded in medical history.
Now aged 11, there is nothing to distinguish Summer Vincent from any other happy and active 11-year-old.
She’s into gymnastics – in fact, is a former county champion – is at secondary school and as her dad, Emplas’ sales director Jody Vincent, notes with a slight sense of paternal trepidation at what may lie ahead as the parent of a soon to be teenager, into make-up and clothes.
That Summer is here at all, however, is a miracle. She was diagnosed aged three-months with a condition so rare, that it was one of only three cases ever recorded in medical history.
“We’d noticed a lump on her neck,” explains Jody, “so we’d taken her to the doctor and they’d referred us to Glenfield Hospital in Leicester.
“And then we got the diagnosis, that it was a tumour growing from her jugular vein. That hits you but when you’re then told what it was doing, it’s devastating.”
The tumour was behaving a like a garden vine, growing from her jugular but wrapping itself around Summer’s organs, vocal chords and nerves which, if left untreated, would constrict and shut them down.
“They told us four days before the actual operation,” continues Jody. “It was incredibly stressful. We had to get my parents to pick us up from the hospital because we were in pieces.
“The news was so devastating it sort of manifested itself physically, I was sort of doubled-over with it”, he adds.
“At that time I’d been at Emplas for less than five-months. I was worrying about my job as well as everything else, and that’s why I’ll always be grateful to Ryan and Kevin [Johnson]. Kevin said to me that they’d been there for 35-years and whenever I came back they’d still be there, my job would be waiting for me and not to give work a second thought. It just took away some of the stress.”
Nonetheless, it still meant an agonising nine-hour wait, while three-month year-old Summer went through major surgery to remove the tumour from her body but also open-heart surgery to ‘harvest’ her pericardium (the lining of the heart), which was used to reform the section of her jugular vein taken out in the operation to remove the tumour.
She also had her diaphragm removed to reduce mass inside her body. “In fact, you don’t need it to breathe, and by the time we get to adulthood we become a little bit lazy and a lot of us just breathe through our chest, so you don’t need it,” Jody explains.
Surgeons successfully removed the tumour, without damage to her right arm nerves and her vocal cords. But then Summer developed a dangerous blood clot in her vein afterwards and had to have two more operations to remove the clot and stop the internal bleeding.
“There were just wires and tubes everywhere. It’s such a shocking thing to see your child like that. We were grateful she was still with us, but it was still very hard”, Jody says.
Summer’s care was transferred to Great Ormond Street Hospital when she was four-years’-old. The rarity of her condition attracting global medical and national media interest.
“No one had seen it before, so the medical profession was interested to find out more,” explains Jody. “I remember we were asked to attend an event with 10 other children, each with an incredibly rare condition. There were doctors there from China and all over the world.
“We also got a lot media attention and we were able to sell our story and then donate all of the money to Great Ormond Street Hospital as a way of giving at least a little back.”
Today, alongside the 20 hours a week Summer spends doing gymnastics, she still undergoes regular checks and remains under the supervisory care of doctors and staff at Great Ormond Street.
The contribution it made and the ongoing support that Summer still receives is what has now prompted Jody to sign-up for this year’s London Marathon.
“The care we have had at Great Ormond Street has been incredible and we’re massively grateful for everything. Summer wouldn’t be here without it, and a lot of other very poorly children also wouldn’t be here.
“I guess fundraising is just a small way of showing our appreciation of what they’ve done for us as a family.”
Jody’s decision to run this year’s marathon follows on from the charity cycle ride from Land’s End to John O’Groats in 2012, again in aid of Great Ormond Street Hospital.
“So far, I think we’ve raised around £30,000 for Great Ormond Street in total and hope to add at least another £2,000 to that this year when I do this year’s marathon.
“I’m at the start of my training and I’ve been doing a few Park Runs but what’s amazing is that Summer’s been there training with me. When we got the original diagnosis and after her operation that would have seemed an impossibility.”
The London Marathon will take place on 2 October. Held as a virtual event last year, this year’s challenge will be held as a hybrid-event with 50,000 runners undertaking the 26.2-mile course around the streets of the capital and a further 40,000 entrants running wherever they are at the same time.
Jody will be among the former group hitting the streets of London. “I did do it once before but that was a few years ago and I went hell for leather, probably didn’t train properly and almost ruined myself”, he says.
“This time I’m determined to pace myself and prepare properly, which is probably a good thing as I’m a little bit older now.
“If anyone can support me in raising and hopefully going past that £2,000 figure, then we’d be massively grateful.”
To donate to Jody’ and Summer’s Great Ormond Street Fund please visit:
