Claire Scott had just given birth to a baby girl by C-section. Barely 24 hours later she had discharged herself and was ignoring her own pain while a doctor said her son Liam had a 40% chance to live.
It’s the words no parent ever wants to hear, that their three-year-old child has aggressive neuroblastoma cancer and needs to start gruelling treatment immediately if they are to have any hope of survival.
“I remember feeling as if my whole world had shattered,” Claire told Sky News. “I didn’t feel any of my pain, I just felt a pain within me about my child perhaps dying.”
That awful day was 5 July, 2019. Now, three years later Liam is cancer-free after his family raised £232,000 to take him to New York for an experimental vaccine that may have saved his life.
Today, Claire and her husband Mike are close to bringing that potentially ground-breaking treatment to the UK so no other family have to face the struggles they did.
She has met Health Secretary Sajid Javid and other senior politicians in her quest to bring a vaccine trial to Britain, and the whole of Europe.
Neuroblastoma is a rare type of cancer that affects around 100 children in the UK each year and is most common in children under the age of five.
The nature of the disease means that even after rounds and rounds of painful treatment, there is a high risk of it returning – with a survival rate of less than 10% with certain relapsed neuroblastoma.
When Claire and Mike heard about the experimental cancer vaccine for children in remission from neuroblastoma, they knew it would be a huge challenge in getting Liam into the trial.
His inclusion depended on him being cancer-free – no sure thing despite the powerful chemotherapy and radiation therapy he was undergoing – and the cost was eye-watering: £232,000.
To make matters worse they had a razor-thin window in which to raise the funds – the first dose of the vaccine had to be administered within 45 days of Liam’s cancer treatment finishing.
Lockdown hampers fundraising plans
In May 2020, in the midst of a COVID-19 lockdown that was cancelling fundraising events around the country, they had raised around £30,000, with only a few months to go until the deadline.
“And you have to raise this money while your kid’s having constant blood transfusions and still having cancer treatment because you have to get to the US to have the vaccine done,” Liam’s dad Mike told Sky News.
They had a close team around them doing everything they could to fundraise, but time was beginning to turn against them in an era when charitable donations were falling as people struggled financially during the pandemic.
Then one weekend everything changed. Their story was picked up by Sky News and others and £100,000 was donated over just two days.
“After that things changed,” Mike said.
There was still a long journey ahead but the donations kept coming in, and it looked like it was going to happen.
COVID-19 a threat even as Liam took part in the trial
When they finally hit their target in late July 2020, Liam’s family and friends screamed and cried with joy.
“It was just the most incredible feeling, knowing that we were going to New York,” Claire said.
“It wasn’t a dream anymore. It was reality. It was gonna happen.”
And despite some difficulties with travel arrangements – flying to the US was banned at the time – the family flew out to for the first of several vaccinations at Memorial Sloan Kettering Cancer Center in Manhattan in September.
But even after everything they had overcome to get Liam to America, they could not relax due to the constant threat of COVID-19.
The first coronavirus vaccinations in the UK were still a couple of months away and Claire and Mike knew that if Liam caught the virus it would prevent him travelling back to the US for his appointments, putting the entire treatment at risk.
Cancer-free and thriving as mum Claire meets with Health Secretary
Fast forward to today: Liam is back home having completed his treatments in America last year.
Now six years old, he is enjoying school (and Paddington Bear) and the family are settling back into normal life at home in Edenbridge in Kent.
Most importantly, Liam remains cancer-free.
Now, Claire and Mike want to ensure that UK children don’t have to raise huge sums of money and travel thousands of miles to take part in the vaccine trial.
Their quest has seen Claire meet Health Secretary Sajid Javid, and the family hopes to make the UK a centre for the trial in the not-too-distant future.
She said: “When I had that meeting with Sajid, I think putting everything across to him by telling him our personal story, he related to it on perhaps a more emotional level.
“He is a father himself and he was very keen to do a vaccine trial and he said it was just a matter of now speaking to the people and getting his team involved.”
Any trial in the UK could save the NHS millions on cancer care for children with neuroblastoma who relapse, Claire believes.
Asked how she felt after her family’s incredible journey, she said it can be difficult to think about what happened.
She added: “I guess it says you don’t know what the future holds, but we’re just so excited that he has a future and we can see that as each day passes.
“It is very difficult, I’ve got to say, to look back.
“But I’m doing it because I want to help others and I want to make sure that no family has to go through what we’ve been through, and also no child has to go through what Liam has gone through.”