Insurance firms block cancer teen’s final wish

Leon, who is battling a rare form of incurable cancer, was delighted when doctors confirmed he was fit enough to make the trip of a lifetime to Florida at the end of this month.

The 15-year-old Transformers fan had his heart set on visiting Universal Studios in Orlando and swimming with dolphins.

But now the precious two-week trip, which Leon fears could be his last ever holiday with his family, is in doubt, as every insurance company the family has contacted so far has refused to provide any kind of cover.

And with time running out before he starts his next course of gruelling treatment, the Lochend family faces a nail-biting race to make his dream come true.

Mum Nicky, 42, said the insurance frustrations had come as a huge blow, particularly as medical professionals have given the holiday plans the thumbs-up.

She said: “Leon’s doctor has said he is fit to travel, he is doing really well, but that’s not good enough for the insurance companies.

“They won’t cover him. We have to fly out on March 26 so we can be back for his next stage of chemotherapy.

“Everything is in place, we have the money for the holiday and know where we want to go.

“But we can’t book it until we have his insurance.

“It’s heartbreaking. One minute we’re up because we’re told Leon can go and we know how much it means to him, then things change and we’re down again.”

Nicky said Leon knew it might be his last chance to enjoy a break with her, dad James, 42, and ten-year-old sister Chloe.

“Leon turned to me the other day and said ‘This is probably going to be my last ever holiday’,” said Nicky.

“How can I turn around and tell him that he can’t go because no-one will give him insurance?

“Surely we can’t be the only family in this position.”

The Leith Academy pupil has Ewing’s sarcoma, a rare bone cancer which affects fewer than 30 children in the UK each year.

But Leon’s type, which is in soft tissue, is even rarer, attacking the bones and most commonly occuring in the long bones, ribs, pelvis and spine.

It usually occurs in the teenage years, is more common in boys and may be related in some way to times of rapid bone growth, which may explain why more cases are seen in teenagers.

Nicky says because his cancer is so unusual, insurance firms won’t even quote the family a price.

The lone company that did offer the family a ray of hope quoted £4650 – only to withdraw the offer a day later.

“The problem is they’ve not heard of his type of cancer,” added Nicky.

“It’s rare anyway, but his is even more unusual.

“Because what Leon has is so different from typical Ewing’s sarcoma, the computer system just says ‘no’ to us.

“What’s really upsetting is that Leon is so fit just now. He’s not in pain, he’s not even on medication.

“His doctor says he’s definitely fine to fly – and she wouldn’t say that if she wasn’t confident that he is doing all right.

“Leon is desperate to go. He’s picked the hotel, the Cabana Bay Beach Resort, because it has its own bowling alley.

“He deserves this, he’s just come through more radiotherapy.

“The plan was to go on holiday and come back feeling refreshed so he could start his next lot of chemotherapy.

“The doctors are also looking at putting him on a medical trial in Newcastle or Birmingham, so there’s a lot coming up.

“But now it’s looking like we might not get away at all.”

The blow comes just weeks after Nicky was left stunned by the delivery of an envelope stuffed with £500 in cash, which was pushed through the letterbox of the family home at Hawkhill, Lochend.

“It just had ‘Leon’ written on the front, nothing else,” said Nicky. “It’s a complete mystery.

“I’ve asked around in case anyone knows who sent it but we have no idea.

“It restores your faith in people and is such a nice thing to do. But I wish whoever sent it had just knocked on the door so we could say ‘thank you’ properly.”

Hibs fan Leon was diagnosed with Ewing’s sarcoma in 2013 and had chemotherapy, surgery and a stem cell transplant.

He went into remission in October that year, but the family was then given the devastating news last May that the cancer was back.

It has now metastasized and is in his abdomen and two lymph nodes.

Because it is surrounding blood vessels, the tumour can’t be removed and doctors have warned the cancer is incurable. An online fundraising page was launched last summer after Leon’s story first appeared in the Evening News – and £1400 was donated in just five days.

The Transformers 3D ride at Universal Studios Orlando is one of the resort’s biggest attractions – and Leon can barely wait to try it.

The massive theme park is a teenager’s paradise, with rides and attractions based on some of the world’s best known film characters and stories.

Nicky added: “It was the doctor’s idea that we should get away somewhere warm.

“Leon is a massive Transformers fan – he loves all that stuff. He’ll be gutted if he can’t go.

“It’s not just Leon who will benefit, it’s been tough on his sister Chloe too.

“She has been so excited, and she’ll be devastated too if we can’t go.

“We’re running out of time. It doesn’t seem fair.”

Fewer than 30 in UK develop condition

EWING’S sarcoma is the second most common primary sarcoma in children and young people.

It most commonly occurs in the long bones, ribs, pelvis and spine. Extremely rare, fewer than 30 children in the UK develop Ewing’s sarcoma each year. It usually occurs in the teenage years, and is more common in boys.

It’s not known what causes it, but it may be linked to rapid growth spurts. Although Ewing’s sarcoma is a type of bone cancer, it can also occur very rarely in the soft tissues.

Nicky told last summer how Leon first showed signs of illness in December 2012 when he complained of feeling ‘light headed’.

Doctors at first suspected appendicitis and he was taken into theatre. Later the family was told the surgeons had found a cancerous mass. Joy when he went into remission turned to despair in May last year when a routine scan revealed the cancer was back.

“It can’t be cut out because it’s surrounding the blood vessels,” Nicky told the Evening News in August last year.

Footballer’s emotional tribute to teen

Brave Leon Rendle travelled to Canada last May, just weeks after learning his condition was incurable.

There he met England international and then Toronto FC striker Jermain Defoe, who agreed to a kickabout before one of his matches.

The player’s emotional tribute to him was captured on a deeply moving Youtube video (www.youtube.com/watch?v=AK9UJD8N_eg ).

Because that trip had been booked before the devastating diagnosis, local charity CCLASP, which helps children with life-threatening conditions, was able to find an insurance company willing to help.

Weeks later in July, thousands cheered as Leon carried the Queen’s Baton past Meadowbank Stadium, en route to the 2014 Glasgow Commonwealth Games.

A VIP day out at Easter Road organised by Hibs, however, was later spoiled when a sick yob was heard making cruel jibes about his hair loss.

Friends and strangers have rallied around to raise money to help support Leon and his family with a series of fundraising events, including a football tournament last week.

In October, Leon was chosen to lead Scotland’s first Cancer Research UK March on Cancer event and named as the face of the charity’s Stand up to Cancer awareness campaign.