Mum who thinks itchy hands are caused by household cleaner is told she has deadly cancer and needs gene therapy costing £16.5K a month
A mum of three is fighting against the clock to raise money to fund lifesaving treatment after her itchy hands turned out to be a rare and deadly form of cancer.
Maria Barry, 58, who lives in Harrow, north west London, with her children, Nico, 32, Luca, 30, and Nadia, 27, began suffering from itchy and cracked hands during the first lockdown in March 2020.
At first, Maria thought it was a reaction to a new cleaning product she was using, but in April 2022, she was diagnosed with bile duct cancer – which is rare with around 1,000 new cases a year in the UK according to the NHS – and, without treatment, she now has just three to six months to live.
Maria, a children’s nursery manager, said: “The gene therapy treatment that I need isn’t available on the NHS and costs £16,500 a month privately, so we are desperately trying to raise money using a GoFundMe page.
“Anything that we can get will go towards saving my life. My kids all live at home with me and I don’t have grandchildren yet. I’m not ready to die, I’m fighting to live.”
For Maria, her issues began when her hands started to itch relentlessly.
She said: “I’d had gallstones a couple of years prior and ended up having my gallbladder removed, but other than that I’d never had any health problems.
“During lockdown, I developed a condition where my hands cracked up and I had to wear gloves. I’d initially thought it was a reaction to a new cleaning product I’d bought to clean the cooker.
“They were so itchy and I was getting aches and pains in my elbows, joints, everywhere, and I was constantly on the phone with the doctor.”
Due to lockdown, Maria couldn’t get a face-to-face appointment so had to send her GP photos of her red and sore palms.
Over the next year, she was prescribed various steroid creams, gels and UV treatments, but to no avail.
She said: “Nothing seemed to work and I was eventually referred to a dermatologist.”
She added: “It took a while to see them and, even then, they were suggesting new medication to try.”
But Maria says her intuition was screaming at her, telling her this was more than itchy skin.
She said: “I just knew something was wrong. It had been months of trying different solutions and nothing had worked. Something had to be seriously wrong so I demanded a CT scan.”
On Christmas Eve 2021, Maria was asked to go in Northwick Park Hospital for her results and – fearing the worst – she took along her grown-up children Nico, who is not working, Luca, a salesman, and Nadia, a football centre manager, for support.
She said: “The news just completely shocked me. The doctors suspected I had a rare cancer and would need to undergo a biopsy.
“I was devastated and it completely ruined our Christmas. The entire time, I just kept worrying about what was to come.”
After New Year, Maria had three biopsies which were all inconclusive.
But she said: “After the fourth biopsy, they confirmed they had found something malignant.
“It was so rare that the doctors said they needed to run further tests to find out what type of cancer it was.”
In April 2022, Maria was officially diagnosed with bile duct cancer. It starts in the bile duct and, in her case, after lying dormant for years, had now spread to her liver.
She said: “Doctors confirmed I had a 9cm mass known as intrahepatic cholangiocarcinoma and I was offered chemotherapy which started in May.”
Sadly, Maria struggled to cope with the treatment.
She said: “I was so fatigued and sick that the doctors decided to put me on chemo rest, which I’m still on at the minute, because it was getting to the point where I thought the chemo was going to kill me.”
But, no longer on treatment, Maria’s prognosis was bleak as doctors gave her just three to six months to live.
Desperate for an alternative, her daughter Nadia began searching for other options.
Maria said: “Nadia found a gene therapy trial that had recently been run at University College London Hospital.
“We enquired about it but, unfortunately, were too late to take part.”
Unlike chemotherapy, gene therapy only targets the cancer during treatment, which can mean there are fewer side effects for the patient, and Maria believes she would be likely to benefit from it.
She said: “The treatment isn’t available on the NHS but, right now, it’s my only chance at survival or prolonging my life.
“It costs around £16,500 a month, which we have been fundraising for.”
After raising enough money for one month’s worth of treatment, last week Maria started the medication, which consists of two tablets taken daily.
She said: “I was in constant pain and feeling sick after having chemo.
“I’ve recently started on the medication and, while it’s too soon to tell yet, I’m hoping it will improve my quality of life.
“Each month on this treatment costs £16,500. It’s such a big ask.”
She added: “I wish there were other options but this is the only chance I have to live so we’re fundraising at the moment.
“We managed to raise enough money for July’s medication and we’ve nearly reached our target for next month’s, but what are we going to do after that?
“If we don’t have enough money, am I just supposed to die?”
She added: “It feels so unfair and I’m struggling to come to terms with it, how money is standing in the way between me and the treatment I need to live.
“I don’t want to leave my kids, I’m not ready to go.”
Nadia Barry, Maria’s daughter, is determined to fight for her mum.
She said: “Whenever I tell people that my mum has bile duct cancer they always say they’ve never heard of it and that was how we felt when we first found out.
“We want to raise awareness so that more people know about it and know the signs to look out for.
“My mum is young, her kids all still live at home and she’s not ready to die yet.”
She added: “She’s dedicated her life to looking after children by working in social services and later as nursery manager, and has helped whoever has needed help and never judged anyone. She is the neighbourhood hero and is loved by all in the community. We cannot imagine our lives without her.
“I’ll do anything in my power to save her but, as a working class family, we can’t afford to keep up with the £16,500 bill every month. which will be around £170,000 for the year.
“We know times are tough and we appreciate any help we receive.
“I’m going to fight for my mum.”
To donate to Maria’s cause, visit: www.gofundme.com/f/pv22et-help-save-our-mum
