Mum of five-year-old East Lothian girl suffering from cancer relapse starts fundraising campaign to access rare treatment

East Lothian family seeks US vaccine trial for little Flora
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The mum of a five-year-old girl suffering with the recurrence of a rare cancer has launched a fundraising campaign to get her back on a US-based vaccine trial.

Flora Gentleman was diagnosed with neuroblastoma when she was just two in 2021 - an aggressive childhood cancer with a 50 per cent chance of long-term survival. After more than a year of treatment on the NHS, Flora's family were told that she had no signs of active disease - meaning that she was eligible for a rare, New York-based vaccine trial, aimed at preventing relapses.

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The East Lothian family and their community rallied together, managing to raise an incredible £305,000 in a fundraising campaign - and in September 2022, Flora began the trial. Flora, who has also been diagnosed with autism spectrum disorder and is currently non-verbal, flew with her family to New York three times, receiving six vaccines as part of the trial.

Flora Gentleman with her mother Stephanie Kent. Photo: Stephanie Kent/ SWNS.Flora Gentleman with her mother Stephanie Kent. Photo: Stephanie Kent/ SWNS.
Flora Gentleman with her mother Stephanie Kent. Photo: Stephanie Kent/ SWNS.

However, in September 2023, a routine scan revealed that Flora had relapsed, requiring her to leave the trial and undergo further courses of NHS chemotherapy and immunotherapy at a children's hospital in Edinburgh.

Mum Stephanie Kent, who has been sharing Flora's journey on social media, has now made a plea for donations to the family's fundraising campaign, in the hopes of getting Flora back on the vaccine trial and preventing further relapses.

A total of £147,000 is still available from prior fundraising, but more funds will be needed to get Flora a place on the trial.

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"We knew after getting the diagnosis and speaking with the consultants that it has a really high relapse rate," said Stephanie.

"We started looking at maintenance options in the States for once she finished her NHS treatment, because they have more treatment options there. These maintenance treatments kind of work as an extension of immunotherapy, so it basically trains the body to recognise cancer and stop it from coming back.

"We found one in New York and fundraised around £300,000 when Flora was sick the first time around. She was on that for about a year, and then at the end of summer 2023, we found out during a routine scan that she'd relapsed.

"The trial gave us a taste of what life should be like post-cancer treatment - Flora was thriving. She had progressed from using laminated pictures to communicate to using an app on her iPad, giving her a voice.

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"She enjoyed travelling, staying in different hotels and visiting new places - all things we weren't sure she would cope with. We are determined to get back into this place again, a place of good health and happiness.

"In an ideal world, Flora will complete her NHS treatment and reach remission once again. In this case, we would want to have the funds available to access maintenance treatment immediately afterwards.

"There are a couple of treatment avenues we're currently exploring - all of which will cost hundreds of thousands of pounds."

Flora's family have been sharing her journey on social media under the handle @floras_fight, where supporters can find donation links and receive updates as she progresses through her treatment.

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Mum Stephanie has been overwhelmed by the support so far and is urging anyone who can to contribute.

"The response has been really good. People have been following Flora's journey - even when she was in remission," said Stephanie.

"We're at the stage now where we're trying to brainstorm ideas for more fundraising, so we'll hopefully have more events coming up in the spring. At the moment, we're trying to get people to fundraise with us and help us come up with ideas, because it's really hard for us to put on events.

"We're in and out of hospital, and with Flora's immune system, we do a lot of isolating to keep her safe.

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"We want to say thanks for the continued support. We've been on this journey for years now, and to have people that have been there since the very start and still supporting us means everything. We need everyone's support now more than ever.

"It's really important to keep getting the word out about Flora - the more people that know about her, the more likely it is that we can raise the money to access these treatments. Fundraising will help get us closer to being able to access treatments that could enable Flora to live a life without cancer."

Donations can be made to Flora's campaign online or by texting FLORA and any amount up to £20 to 70085.