Teen with ultra rare tumours has leg amputated after limb swells to three times normal size

A brave teen has had her leg amputated after rare tumours made it grow to three times its normal size.


Tia Leigh suffers from Neurofibromatosis Type I which had left her right lower limb hugely swollen, lumpy and seven centimetres longer than her left.


The 14-year-old had been desperate to lose the affected limb since she was seven years old after children subjected her to cruel "fat leg" taunts .


After doctors discovered a malignant tumour behind her knee, she finally got her wish.


“We saw the doctor in January and he said one option, if the cancer grew or became more painful, the option was amputation above the knee,” Tia said.

 

Brave: Tia was diagnosed with neurofibromatosis type 1

“I asked the doctor when I was seven to have it amputated because I hated the way it looked because of the tumours.”


As her teenage years approached she began to think her leg was ugly.


“She was bullied a few times because of the look of it,” Tia’s mum Lindsey said.


“They would call her fat leg. I don’t think, being kids, they realised how much that would hurt.”


Tia asked if she could have the limb taken off again when she was 11.


“The doctor said, ‘No,’ Lindsey, 31, said.


“The NF1 specialist she sees in London said it was not the right option then but then they found the cancer behind her knee.”


Tia has been inundated with messages online telling her how “brave” and “amazing” she is.


“To us it is just life,” mum-of-three Lindsey said.


A fundraising page has now been set up to help raise money for a wheelchair for Tia.

Operation: One of Tia's legs was seven centimetres longer than the other

The problems with her leg means she has struggled to walk since she was three.


“There were literally thousands of tumours,” Lindsey said.


“They go all down her nerves. They made her leg massive. You could feel all the little humps and bumps.


“They think it is one of the conditions the Elephant Man had and that is why he had the appearance of being lumpy and bumpy.


“She has always hated it,” Lindsey said.


“She does get down in the dumps about her leg but we are not the sort of family to let that happen.

Surgery: Doctors removed the leg after finding malignant tumour

“We’ve always treated her like she is a normal child.”


The disease in Tia is “low grade” and not thought likely to be terminal.


But there are other concerns.


“She knows the condition is genetic, so even at 13 she’s planning to adopt rather than have her own,” Lindsey said.


Before the op on Wednesday in London’s Royal National Orthopaedic Hospital, Lindsey was worried.


“I was determined to bring her home and not have it done,” Lindsey said.

Battler: Tia doesn't let her condition get her down, her family say

“I was petrified but she was cool as a cucumber and said, ‘No, we’re having it done.’


“It was like going down to have her tonsils out. I thought when she got to the theatre to have the anaesthetic she would break down.


"But she was laughing with the anaesthetist about the surgeon and the doctor. They were talking about the ruckus he was making outside.”


“I was trying to hold my tears back and she was laughing her head off,” she said.


“I expected her to be crying her eyes out but she was fine.”


“She was a bit drowsy and tearful after but she kept saying she did not regret it.


“She asked, ‘Please would you go and ring Grampy Ken.’

 

Tia Leigh in hospital waiting for her operation

“She was worried about him because he was worried about her. That’s why she was crying because she was worried about him.


“As soon as I spoke to him there were no more tears.”


That was not the first thing she wanted though.


“The first thing she did was ask if she could have a McDonald’s,” Lindsey said.


The nurse warned she might be sick.


“No, I’m never sick,” Tia said. “I need a McDonalds.”

Funds: Tia now needs a new wheelchair following the amputation

Lindsey said: “She ordered a double cheeseburger, medium fries and a Fanta.”


“I just think she is amazing. I would have thought she would have gone into meltdown and realise the massive surgery she has had but she has been nothing but happy.”


Tia has given the remains of her leg a name. “She has called the stump Percy,” Lindsey said.


“I don’t know why. Her friend Dylan had his leg amputated and his stump he named Stumpy. So she called hers Percy.”


Tia’s leg has not been her only problem.

Cruel: Bullies would make fun of Tia's "fat leg" not realising the truth

She went blind in her right eye when she was 15-months-old because of an optic nerve glioma.


At nine a tumour grew on the nerve in her left eye. Doctors are baffled how she can still see with that eye.


“She could still go blind,” Lindsey, who lives in Cwmbran with Tia, said.


“She has regular eye tests for both eyes.”


If she starts going blind she will need chemotherapy.


“They do not know how she has got the glioma and is not blind,” Lindsey said.


“The only thing they can think of is that there is not enough pressure on her eye to make her blind.”


To donate to the fund for a wheelchair for Tia, visit: https://www.gofundme.com/ymarug