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Mum from Vinters Park, Maidstone, raising funds for daughter who has neuroblastoma

A determined Maidstone mum is fundraising for a potentially life-saving vaccine after her little girl was diagnosed with a rare and aggressive form of cancer.

When Nellie-Rose Cullerton, who is three, was diagnosed with neuroblastoma in March, doctors gave her a four out of 10 chance of survival.

Nellie-Rose, from Maidstone has neuroblastoma, a rare and aggressive form of cancer
Nellie-Rose, from Maidstone has neuroblastoma, a rare and aggressive form of cancer

After months of treatment, with radiotherapy still to go, her family are hoping all the cancer has been removed.

But Nellie-Rose's mum, Leighann Lynes, is leading a fundraising campaign to pay for the toddler to travel abroad and take part in a trial for a vaccine which could stop the neuroblastoma from returning.

The exact price of the vaccine is not yet known but could cost hundreds of thousands of pounds. The trial is not available in the UK and is currently being run only in America.

Miss Lynes, 27, a purchasing assistant who lives in Vinters Park, said: "She has been amazing through this. She misses nursery, she misses her friends. You just never expect this to happen to you.

"I remember signing off for her chemotherapy - signing the consent forms, it's petrifying.

Nellie-Rose with her mum, Leighann Lynes
Nellie-Rose with her mum, Leighann Lynes

"It's knowing you're going to put her through great pain and, yes, it's the best thing in the long run but it's still extremely unfair.

"These are the cards we have been dealt but I would be lying if I said I don't sometimes sit in the hospital thinking 'Why is this happening to us?'"

According to charity Solving Kids' Cancer, neuroblastoma has one of the lowest survival rates of any childhood cancer, and sees tumours often occurring in the adrenal glands or abdomen.

Half of all neuroblastoma cases are classified as ‘high-risk’, where the cancer has spread by the time it is diagnosed.

Immediate treatment is required, as occurred with Nellie-Rose.

Nellie-Rose, from Maidstone, has neuroblastoma, a rare and aggressive form of cancer
Nellie-Rose, from Maidstone, has neuroblastoma, a rare and aggressive form of cancer

Children diagnosed with high-risk neuroblastoma have about a 40-50% chance of long-term survival.

But if a youngster does relapse, their chances of long-term survival are less than 10%.

This is why Nellie-Rose's family are so keen for her to take part in the trial.

A scan at Maidstone Hospital revealed a 13cm by 14cm tumour in Nellie Rose's stomach. The cancer had also spread to her bone marrow, it was discovered.

Following eight rounds of chemotherapy, the cancer in her bone marrow was gone and she underwent a six-hour operation to get rid of about 98% of the tumour, followed by more chemotherapy.

'I will live every day in fear that it's going to come back...'

A chest infection meant she had to be moved to intensive care at St George's Hospital, in Tooting, and Leighann and dad Gavin Cullerton, a maintenance engineer, are now waiting for Nellie-Rose to be well enough to begin radiotherapy.

They are hopeful she will be able to go home in time for her fourth birthday on September 1, and travel in to hospital for radiotherapy.

Nellie-Rose has to be in remission to be eligible for the vaccine.

"It's life-saving. If the trial works it could mean the cancer doesn't come back. I will live every day in fear anyway that it's going to come back but I feel at least if we do the vaccine I know I have done everything I possibly can," Miss Lynes said.

So far, nearly £18,000 has been raised for Nellie-Rose's campaign, thanks to colleagues who have been handing out flyers, friends designing charity face masks and her 13-year-old cousin embarking on a bike trek.

To support Nellie-Rose, click here.

Read more: All the latest news from Maidstone

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