Five years ago, Bethany Lewis found a lump in the middle of her back. Now she has been told she only has 18 months to live.
Bethany, aged 20, was taken to her GP when she first found the lump on her spine, and was told it was a fatty lump which the family could pay for privately to be removed.
But the lump started getting bigger, and mum Kirsten worried it might be fibromatosis, specifically a desmoid tumour, which Bethany’s father and grandmother both have.
Now Bethany can barely walk without a crutch and has been told she has six to 18 months left to live.
A desmoid tumour is an abnormal growth that arises from connective tissue – which is the tissue that provides strength and flexibility to structures such as bones, ligaments, and muscles, and the tumours can occur anywhere in the body.
Mum Kirsten, who lives in Efford with her six children and husband, said: “It started off as a lump in the middle of her back. I took her to see our GP at the time when we lived in Bristol.
“He dismissed it and said it was just a fatty lump that you could have done privately to be removed. I did explain to him that there was a history of fibromatosis in the family.
“It was just dismissed. And then it started to get bigger. And then she started to have more problems with it.
“We saw several doctors after that. But still, they wouldn’t do testing on it to see if it was the same condition. And then when we moved down here four years ago, she started having problems walking. So she ended up using a crutch.
“It was just constant back and forth to the doctors trying to get them to listen. It’s only this year we’ve done genetic testing on all the children and four out of the five children have got have the condition.
“I had a baby last year and she now has a lump on her back, which is being looked at next week by paediatrics, and obviously, because of the family history, it’s a bit of worry.”
The distraught mum says her daughter can’t even walk due to the pain.
“My husband’s a carrier, and so is his mum, and now he’s passed it on to my children,” she said. “It’s that gene that causes desmoid tumours to grow. They can be sporadic, and they can grow any part of the body.
You can stay up to date on the top news near you with PlymouthLive’s FREE newsletters – find out more about our range of daily and weekly bulletins and sign up here or enter your email address at the top of the page
“My husband’s mother has had extensive surgery all over for removing them. But she’s 77, she’s had a full life. But she’s lived with the condition. My daughter is only 20 years old, and she is suffering so much that she can’t even walk, because of the pain.
“Doctors in Oxford wanted to operate but they decided that it would cause more problems to operate because they said they had to remove so much tissue, that it would cause problems with her shoulder and things like that.
“But the thing is, if they would have operated then, yes, you would have had problems with her arm, but she wouldn’t have now been told, ‘You only have 18 months to live’.
“We had a meeting with them last week, and they gave us their prognosis of six to 18 months. They couldn’t answer the questions I had, you know, like, ‘Why did you leave it so long? Why wasn’t it operated on? Why didn’t you give her the option of surgery? Why did you take it away?’
“It’s just so confusing.”
The loving mum explains Bethany is due to celebrate her 21st birthday just before Christmas.
“I can’t just sit back and let her die,” she said. “I can’t, I’m her mum at the end of the day. I’ve got to bathe her, wash her, get her dressed.
“They’re saying, ‘Make her last month memorable’. I don’t want to do that. I don’t want this to be her last birthday, I want to have many more birthdays, whether or not we have this over our heads that this will kill her.”
The family have set up a GoFundMe which will go towards transport and funding for Bethany to seek private help.
“We’re a big family, we just haven’t got that kind of money to throw at transport and things like that up and down the country, she needs to get there, then we will try and do it,” Kirsten said.
“But we just need that extra support. If the NHS isn’t going to fund the treatment, then we’ll have to go privately. And you know what it’s like, it just costs a lot of money. But I can’t put money in the way of my daughter’s life. I want to give her life, I don’t want to take it away.
“We can’t do it on our own. We don’t want to take handouts. That’s really hard for me. I just need that extra help to help her. I don’t want her to die.”
Click here to donate to the family’s Go Fund Me.