East Lothian parents Steph Kent and Jamie Gentleman appeal for help to send daughter Flora to New York for Neuroblastoma cancer treatment

An East Lothian couple have just weeks to raise more than £100,000 to take their three-year-old daughter to America for potentially life-saving treatment.

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Toddler Flora Gentleman was diagnosed with Stage 4 Neuroblastoma - a rare and aggressive cancer which attacks nerve cells in the body - in April last year when she was just two years old.

In the month before their daughter’s devastating diagnosis, mum Steph Kent and dad Jamie had watched Flora’s health rapidly deterioriate; she wouldn’t eat or drink, had lost all her energy and wasn’t her usual hyperactive self.

Steph Kent and Jamie Gentleman with their three-year-old daughter Flora

“Flora was diagnosed with autism just a few months before and she is non-verbal. So when she’s unwell, she won’t say she’s not feeling well or point to a sore tummy or anything. It’s a bit of a guessing game,” said Steph, who lives with her family in Aberlady.

“All of a sudden, she just sort of started not to look herself. She lost her appetite, she was pale, she was barely eating anything and we were even struggling to get fluids in her.

“One day she vomited and she just looked dead tired. She’s always been so active, running around and she wasn’t like that. She wanted to lay about on the sofa and if we would go for a walk she wanted to stay in the buggy which wasn’t like her.”

After a few days of Flora being poorly, Steph and Jamie, who have been together for ten years and are now engaged, noticed swollen lymph nodes on the back of the youngster’s head and decided to take her to the GP.

Flora Gentleman was diagnosed with Stage 4 Neuroblastoma in April 2021

It would be the first of several visits, with the new parents being told each time it was a viral infection and that their daughter would get better soon.

But after a month had gone by with no improvement, Steph found Flora to have deteriorated significantly and rushed her to A&E.

“She was very floppy and looked a grey colour. Her eyes had a sort of yellow bruising all around them. We took her straight to A&E and I was even struggling to keep her awake in the car,” she said.

Flora Gentleman loves watching Peppa Pig on her tablet

“We thought she was maybe dehydrated or something. My mind never went to cancer.”

But cancer it was – with numerous tests, x-rays and MRI scans having revealed a very large tumour growing in Flora’s stomach.

“It was a total shock. I remember looking at Flora sitting on the hospital bed and she looked really, really small. I just remember not quite processing looking at her that she had cancer,” said Steph.

“We were in complete shock. I knew things were bad when they kept us in and did more tests but you can’t prepare to be told it’s cancer. It was a really hard pill to swallow.”

Flora on her dad Jamie's shoulders

Steph’s fears were made worse when the doctors’ initial optimism left and they told her not to Google anything about Neuroblastoma. They wouldn’t even tell Steph what Flora’s chance of survival was.

“That time just felt like one piece of bad news after another. First she had cancer and then a massive tumour was found and then we learned that it had spread to different parts of her body.

“Then it was Stage 4 Neuroblastoma which is a particularly aggressive cancer. It was just one thing after another.”

The last year has seen Peppa Pig-loving Flora undergo intense treatment at Edinburgh’s Sick Kids, including a major abdominal surgery to remove the tumour. She has also been through eight rounds of chemotherapy, three weeks of radiotherapy and a course of immunotherapy - the latter of which she has only two rounds left before her treatment is finished.

“That will hopefully be her chance to ring the bell so the end is in sight and things are calming down,” said Steph.

Flora Gentleman has two rounds of immunotherapy left before she is due to complete treatment

But she added that that moment will be bittersweet, as there is still a 50 per cent chance of Flora’s cancer returning quickly. And if that happens, the toddler’s chance of survival drops to just 10 per cent.

Steph and Jamie, both 30, are now trying to raise a one-off payment of £312,000 for a special treatment in New York which aims to keep the cancer away once a child is in remission. It would see the family travel to the States several times over three years.

“Some families stop here because the treatment is so intense and they don’t want their child to go through anything else which I totally understand,” said Steph.

“But whether it’s a one per cent chance or a 90 per cent chance, we want to give Flora whatever help is out there. We’re fighting for that chance.”

Fundraisers have been held worldwide through which around £200,000 has already been raised.

But with Flora set to start the treatment in August, it’s a race against time to raise the final £112,000.

“We have to have that money up front, it’s not a pay in installments type of arrangement. We need £312,000 to be able to start the treatment otherwise we can’t do it,” said Steph.

She added that the efforts so many have gone to to help her young daughter have left the family speechless.

“We wouldn’t be where we are now without the support everyone has given us, we just want to say a huge thank you,” she said.

“Anything you can do to help - whether it’s donating or just sharing Flora’s social media and fundraising pages - is so appreciated and goes such a long way.

“Flora is such a happy girl despite having gone through such an incredibly tough time. She always bounces back so quickly. She doesn’t know what’s going on but she just gets on with it and we are just all in awe of her. She’s amazing. She’s one in a million. I’ve never met anyone like her.”

To donate, go to https://www.solvingkidscancer.org.uk/Appeal/flora. You can also follow Flora’s progress at https://www.facebook.com/FlorasFight