Fund-raiser to lose his jaw due to rare tennis ball sized tumour

A routine trip to the dentist revealed that Darren Wilkinson had a tennis ball-sized tumour in his jaw.

It turned out to be a condition called ameloblastoma which affects just one in five million people of Darren’s age and ethnicity.

And although the tumour is benign it has to removed, along with Darren’s entire lower jaw and teeth.

He will be fitted with a metal frame which, over the course of more than a year, will encourage his jaw to grow back.

“There is a long road of discovery before me,” says Darren, 50. “I think I will be able to handle the physical side of things, but I have no idea what the psychological impact will be. It will take more than a year for the doctors to rebuild my face.”

Darren and his wife Mel are well known in Sheffield as they organise the annual Santa Run and other fund-raising events throughout the year.

It was Mel who convinced Darren to go the dentist after he suffered recurrent sores in his mouth.

“I hadn’t been to the dentist for about 27 years,” says Darren, of Chapeltown, Sheffield.

“But Mel insisted that I go and get checked out. The dentist did an x-ray and said she’d never seen anything like it before.”

Initially it was thought that Darren had a large abscess, but further tests and biopsies taken from his jaw bone at Sheffield dental hospital revealed something far more sinister.

“We had to wait three weeks over Christmas for the results which was awful,” says Mel.

“We were then told it was a very large tumour and one of the rarest forms – with just one in five million people being diagnosed with it. It is an extremely slow growing tumour which means Darren could have had it for years.”

“If it hadn’t been for Mel making me go to the dentist I would never have discovered it. I would also urge people to go to the dentist and we would like people to be offered an x-ray at the dentist on an annual basis.”

Darren now faces the prospect of life-changing surgery on March 20, at the Royal Hallamshire Hospital in Sheffield.

He is unable to eat solid food at the moment as the tumour has made his jaw so fragile. And for weeks after the surgery he will have to be fed through a nasogastric tube and also have a tracheotomy to help him breathe.

Some people have a bone graft from their fibula bone to replace the missing jaw, instead Darren is undergoing something called bone distraction osteogenesis. It is hoped this will encourage Darren’s jaw to grow back.

“They remove his jaw below the hinge joint and then insert what looks like Meccano to the bits of his jaw that are left,” explains Mel, who used to be a nurse before becoming a teacher.

“There will be two screws out of the back of his neck and we will have to turn them twice a day as the new bone grows.”

But before he goes through this ordeal, the generous couple’s thoughts turn to others.

“We want to raise awareness of this little known condition,” says Mel, who along with Darren runs Run For It, which organises fund-raising events aimed at getting more people of whatever age or ability, running.

“We know how devastated, lonely and isolated we felt when we heard what Darren had that we wanted to let people know there are people out there to talk to who have been through it.”

Darren, who is a carer for a young man with complex needs, says social media has helped him face what is to come.

“They tell you not to look at Dr Google, but I have found people on social media who have been through this, although they mostly have their tumours on one side of their jaw, whereas mine is in the middle which makes it worse as they have
 to take an extra 1.5cms either
side to make sure they have all
the cells as it can become malignant. But it has helped to talk to people who are further down the journey.”

They have also been helped by the little-known charity the Bone Cancer Research Trust.

And so they have decided to raise awareness in the way they know best, by organising a fund-raising run.

The St Paddy’s Day (& a Pint) family fun run will take place near Meadowhall in aid of the Bone Cancer Research Trust

Darren says: “I have decided to take on this mission to raise vital funds and awareness for a brilliant – but not very well known – charitable organisation.

“On Saturday, March 14, we’ll be hosting a family 5km fun run (fancy dress optional but encouraged), with an inflatable pub at the finish line and a bouncy castle for the kids.

“ We turned the canal towpath red and white at Christmas with the Santa Run – this time we’re going to turn it green and orange for St Patrick’s Day and TeamBones.”

Darren is known for donning outlandish outfits at the runs which are normally in fancy dress.

And he is planning to shave off his hair for the charity.

“There will be a raffle and the two lucky winners will get the chance to shave either side of my head. We’d love to see as many local families come down to support us all,” says Darren, “and to have some fun for what will be my last event for many months.”

He says he does have his moments of anger and hurt at the cards that have been dealt him and it is the unknown that particularly worries him.

But he and Mel are determined to take on the challenge head on and plan to continue with their fund-raising events.

“I’m determined to get out there as soon as I can, to show people that we are going to beat this thing,” says Darren.

Entry to the family run is at www.racebest.com/races/7g53t.