Parents of a one-year-old girl with a rare cancer fear they’ll have to remortgage their house as they race against time to raise £500,000 for potentially life-saving treatment abroad.
NHS doctors won’t pay for leukaemia-stricken Winnie Impey to undergo a pioneering procedure to teach her immune system to fight the disease.
She was diagnosed when she was just 11-month-old after her mother, Lucy, 35, took her to hospital with jaw ache.
Despite initial success after several rounds of gruelling chemo, immunotherapy and even a bone marrow transplant, Winnie’s cancer returned last month.
Winnie’s family, from Nottingham, have now received the devastating news the NHS can no longer offer treatment to cure her, only to prolong her life.
Her parents are now trying to fundraise for private CAR-T therapy in Singapore, and are considering re-mortgaging their home to help cover as much of the cost as they can.
This is the same treatment which cured Oscar Saxelby-Lee, the British boy who won the nation’s heart after his leukaemia battle went viral in 2018.
Kind-hearted strangers raised £500,000 for Oscar’s treatment, and the Impey’s are hoping they can also count on the public’s generosity.
CAR-T therapy is personalised, and involves reprogramming a patient’s immune system cells to directly attack cancerous tissue.
The therapy is available in the UK for children and some adults with one type of the blood cancer, called B cell acute lymphoblastic leukaemia.
One-year-old Winnie Impey, pictured here with her parents Lucy and Luke is counting on the generosity of strangers to raise £500,000 to treat her cancer in Singapore unavailable on the NHS
Medics originally thought Winnie was suffering an ear infection but tests later revealed it was actually a symptom of leukaemia, a cancer of the blood cells
Heartbreakingly, while chemotherapy, immunotherapy, and even a bone marrow transplant showed initial success Winnie’s cancer returned last month
WHAT IS CAR-T CELL THERAPY?
CAR-T cell therapies are available on the NHS for children and people up to 25 with B cell acute lymphoblastic leukaemia.
The treatments involve taking a specific immune cell – known as T cells – from a patient’s blood. T cells help the body fight infection by seeking out viruses and other pathogens, before killing them.
These cells are then engineered in the lab to express a gene that codes for a specific receptor that binds to a protein on the patient’s cancer.
Once these cells are re-infused into a patient’s blood, their immune system is ‘reprogrammed’ to recognise and fight off tumours.
CAR-T – chimeric antigen receptor T-cell – therapy is therefore customised to each patient. It is suitable for those with advanced or worsening blood cancers that are not responding to treatment or have relapsed.
NICE – which provides guidance for the NHS – also recommends CAR-T therapy for adults with diffuse large B-cell lymphoma and primary mediastinal B-cell lymphoma.
The FDA in the US approved two CAR-T cell therapies in 2017.
However, deciding which patients are eligible for treatment on the NHS is left to a panel of expert doctors who assess each patient’s chances of success following a referral.
Winnie’s type of cancer is classed as an undifferentiated leukaemia due to a specific mutation.
While there is a trial to treat this type of leukaemia with CAR-T therapy in the UK, the family have been told Winnie is ineligible.
Now teacher Mrs Impey, alongside her partner Luke, a council worker, are facing the prospect of remortgaging their family home to help raise enough money to get the treatment done abroad.
She said talks are ongoing with a hospital in Singapore but the treatment is expected to cost £500,000.
‘I know this treatment has worked for others and I need to give her this chance,’ she said. ‘I can’t lose my baby.’
Mrs Impey revealed that due to Covid pressures at the time, an initial assessment of her daughter’s jaw was delayed, with the couple eventually rushing their baby to A&E.
‘Because of Covid we couldn’t get anyone to see her,’ she said. ‘They thought it was an ear infection at first.
‘She had a bad cold for a bit, she got very pale before we took her into A&E.’
‘Her jaw had started to become swollen and it was pushing outwards. I was Googling it and it was so rare.’
While Winnie, who will turn two next month, was given a 75 per cent chance of being cured after the bone marrow transplant a few months ago, the cancer returned.
It was after this that the Impey family was told the NHS could no longer offer to cure her cancer but only prolong her life with chemotherapy.
Only 41 per cent of people diagnosed with leukaemia survive their disease after 10 years.
‘We were heartbroken. We immediately started the GoFundMe page in the hope of giving her a chance of beating this,’ Mrs Impey said.
The couple plan to use all their savings and have already raised £42,000.
Her family are considering re-mortgaging their home to help partly fund the treatment for Winnie, who they say is a ‘bossy little character with a great sense of humour’, but have also set up a fundraiser in hopes the public will also come to their aid
Whereas chemotherapy, immunotherapy and even a bone marrow transplant failed the Impey’s hope CAR-T therapy which reprogrammes a patient’s immune system cells to directly attack cancerous tissue could beat Winnie’s cancer
Winnie with her father Luke. The family said delays due to the Covid pandemic meant they could not get anyone to see Winnie’s jaw problem straight away. Teste later revealed her achey jaw was a sign she had cancer
Winnie’s mother said: ‘I know this treatment has worked for others and I need to give her this chance. I can’t lose my baby.’
Her family say Winnie is doing well at the moment but time is of the essence, as she must be well enough to travel to Singapore for the CAR-T therapy
A similar fundraiser helped save the life of another British child with a similar cancer, Oscar Saxelby-Lee, whose family also had to rely on donations to fund his treatment in Singapore. The Impey’s hope the public will also rally to Winnie’s (pictured here) cause
However, time is of the essence, with the family needing to reach their goal within the next few months because Winnie has to be well enough to travel.
‘I’m hopeful that in the next month or two we can be travelling to Singapore even if we have to re-mortgage the house,’ Mrs Impey said. ‘All you can do is try.’
Mrs Impey said Winnie is, for the moment, enjoying the life of a one-year-old.
‘She is doing really well considering, she’s been eating and running around and is just a typical little girl really,’ she said.
‘She is definitely a bossy little character with a great sense of humour and loves being with her family and running around exploring.’
People can donate to the campaign here.
Winnie’s case echoes that of Oscar Saxelby-Lee, another British child whose family turned to fundraising to him the £500,000 needed for the CAR-T therapy in Singapore.
The family raised the money they needed in just three weeks and thankfully the treatment was successful with Oscar being declared cancer free in January 2020.
There are about 9,907 new cases of leukaemia of all types diagnosed in the UK each year, with 4,730 deaths from disease also recorded per year.
In the US there are about 60,650 new leukaemia per year, as well as 24,000 deaths.
About 41 per cent of people with this type of cancer survive 10 years or more.