Parents of 4-year-old girl battling rare neuroblastoma raise £ 250,000

A four-year-old girl with a rare cancer that affects just 100 children in the UK each year is hoping to travel to New York to get a groundbreaking vaccine to reduce the risk of recurrence.

Florentina Burton, from Braintree, Essex, was diagnosed with neuroblastoma – a cancer that develops from specialized nerve cells – in May last year after doctors found a tumor on her kidney.

With parents Amelia and Kevin by her side, Florentina has undergone months of treatment at Great Ormond Street Hospital in London and must now have radiation and immunotherapy. It is hoped that her treatment will end in September.

Florentina Burton (pictured), from Braintree, Essex, was diagnosed with neuroblastoma on May 21 last year, days before her birthday, after doctors found a tumor on her kidney.

Florentina Burton (pictured), from Braintree, Essex, was diagnosed with neuroblastoma on May 21 last year, days before her birthday, after doctors found a tumor on her kidney.

The family raises money for her to get the bivalent vaccine, when Florentina was diagnosed, they were told she wanted treatment for 14 to 18 months, but the cancer has a high relapse rate.  Pictured: Florentina with her parents Amelia and Kevin

The family raises money for her to get the bivalent vaccine, when Florentina was diagnosed, they were told she wanted treatment for 14 to 18 months, but the cancer has a high relapse rate. Pictured: Florentina with her parents Amelia and Kevin

However, the cancer has a high relapse rate.

To reduce this, the family hopes to pay £ 250,000 to fly Florentina to New York for the bivalent vaccine, which is not available on the NHS.

The vaccine works by stimulating an immune response against two different antigens, such as two different viruses or other microorganisms. It is hoped that this will reduce the risk of the cancer returning.

Grandmother Donna Marino said: ‘Florentina is very strong-willed. She has a fighting spirit.

‘She is so determined and has come through things better than expected. She knows what she wants, even at this age. It has really helped her through the treatment. ‘

Donna explained that Florentina was diagnosed after becoming ‘really sick’ around May 20, days before her birthday.

“A month before, she was a little under the air,” Donna continued.

Despite the exhausting treatment, Florentina is able to love her little sister (pictured), who was born in August, and plays with her whenever she can

Despite the exhausting treatment, Florentina is able to love her little sister (pictured), who was born in August, and plays with her whenever she can

Pictured: Florentina smiles while she is in the hospital

Pictured: Florentina in a glittering princess dress

There have been fundraising events for Florentina (pictured left and right), including a £ 10,000 raised Christmas ball, an online auction and a meet and greet

The family has also shared her journey with neuroblastoma via their social media sites Florentina's Footsteps and @florentinafootsteps.  In the photo: Florentina in hospital

The family has also shared her journey with neuroblastoma via their social media sites Florentina’s Footsteps and @florentinafootsteps. In the photo: Florentina in hospital

‘She was not really that interested in doing too many things. So about three weeks before the diagnosis, she was up at night, cold and shaking. She did not like to eat. We thought she had caught something. ‘

What is neuroblastoma?

Neuroblastoma is a rare form of cancer that mostly affects babies and young children.

It affects around 100 children each year in the UK and is most common in children under 5 years of age.

The cause is unknown. There are very rare cases where children in the same family are affected, but in general neuroblastoma does not occur in families.

Symptoms may include:

a swollen, painful stomach, sometimes with constipation and difficulty urinating

shortness of breath and difficulty swallowing a lump in the neck

bluish lumps in the skin and bruises, especially around the eyes

weakness in the legs and an unstable gait, with numbness in the lower body, constipation and difficulty urinating

fatigue, energy loss, pale skin, loss of appetite and weight loss

bone pain, lethargy and general irritability

rare, jerky eye and muscle movements

Source: NHS

Weeks passed, and Florentina’s condition worsened so much that her mother Amelia decided to take her to the hospital.

Mrs. Marino and Florentina’s mother and father had noticed that Florentina was losing weight and had a distended stomach.

Doctors sought a second opinion from Great Ormond Street, where she was immediately transferred to the cancer ward.

At the time, Amelia was pregnant with her second daughter.

Mrs Marino continued: ‘My daughter [Amelia] was in there on his own. She did not have a partner and she was pregnant. It was just awful, really awful. ‘

Florentina received chemotherapy, scans and blood transfusions. In late August last year, doctors removed the grapefruit-sized tumor when it had shrunk enough.

That same month, Amelia and Kevin, who document Florentina’s journey on Facebook and Instagram, welcomed a baby girl.

Despite the exhausting treatment, Florentina is able to love her little sister and play with her whenever she can.

Mrs Marino said: ‘She absolutely loves her. When she’s around her, she’ll do it with Mumi. It has been a really good thing. ”

Florentina, who also loves horses and has two Shetland ponies at her grandmother’s home, must be in remission for a month before she can travel to New York to get the vaccine. The family has raised around half the target of £ 250,000.

There have been fundraising events for Florentina, including a £ 10,000 raised Christmas ball, an online auction and a meet and greet.

Ms Marino said fundraising events and awareness raising will continue so the family can fight for Florentina and other children and families in similar situations.

It is hoped that the bivalent vaccine will eventually be brought to the UK and can help dozens of children with the rare cancer.

The 4-year-old smiles with one of his Shetland ponies

It is hoped that the bivalent vaccine will eventually be brought to the UK and can help dozens of children with the rare cancer

Florentina also loves horses (left) and has two Shetland ponies at her grandmother’s house

To donate to the fundraising appeal for Florentina click here

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