A four-year-old girl with a rare cancer that affects just 100 children in the UK every year is hoping to travel to New York for a pioneering vaccine to reduce the risk of the recurrence.
Florentina Burton, from Braintree, Essex, was diagnosed with neuroblastoma – a cancer that develops from specialised nerve cells – in May last year, after doctors found a tumour 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 is now due to have radiotherapy and immunotherapy. It is hoped 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 tumour on her kidney
The family are raising money for her to get the bivalent vaccine as when Florentina was diagnosed they were told she would have 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 are hoping 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 this will lessen the risk of the cancer coming back.
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. That has really helped her through the treatment.’
Donna explained Florentina was diagnosed after falling ‘really ill’ on around May 20, days before her birthday.
‘A month prior to that she was a bit under the weather,’ Donna continued.
Despite having the gruelling treatment, Florentina is able to dote on her baby sister (pictured) who was born in August and plays with her whenever she can
There have been fundraising events for Florentina (pictured left and right) including a Christmas ball which raised £10,000, an online auction and a meet and greet
The family have also been sharing her journey with neuroblastoma via their social media pages Florentina’s Footsteps and @florentinafootsteps. Pictured: Florentina in hospital
‘She was not really that interested in doing too many things. Then about three weeks before the diagnosis she was up in the night, cold and shivering. She did not want to eat. We thought she had picked up something.’
What is neuroblastoma?
Neuroblastoma is a rare type 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 the age of 5.
The cause is unknown. There are very rare cases where children in the same family are affected, but generally neuroblastoma does not run in families.
Symptoms can include:
a swollen, painful tummy, sometimes with constipation and difficulty peeing
breathlessness and difficulty swallowing a lump in the neck
blueish lumps in the skin and bruising, particularly around the eyes
weakness in the legs and an unsteady walk, with numbness in the lower body, constipation and difficulty peeing
fatigue, loss of energy, pale skin, loss of appetite and weight loss
bone pain, a limp and general irritability
rarely, jerky eye and muscle movements
Weeks passed and Florentina’s condition deteriorated so much, her mother Amelia decided to take her to hospital.
Ms 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 unit.
At the time Amelia was pregnant with her second daughter.
Ms Marino continued: ‘My daughter [Amelia] was in there on her own. She did not have a partner and she was pregnant. It was just awful, really awful.’
Florentina had chemotherapy, scans and blood transfusions. At the end of August last year, doctors removed the grapefruit-sized tumour once it had shrunk enough.
That same month Amelia and Kevin, who are documenting Florentina’s journey on Facebook and Instagram, welcomed a baby girl.
Despite having the gruelling treatment, Florentina is able to dote on her baby sister and plays with her whenever she can.
Ms Marino said: ‘She absolutely adores her. When she is around her she wants to do the Mummy thing. It’s been a really good thing.’
Florentina, who also loves horses and has two Shetland ponies at her grandmother’s house, will need to be in remission for a month before she is able to travel to New York for the vaccine. The family has raised about half of the £250,000 target.
There have been fundraising events for Florentina including a Christmas ball which raised £10,000, an online auction and a meet and greet.
Ms Marino said that fundraising events and raising awareness will continue so that the family can fight for Florentina and other children and families in similar situations.
It is hoped that eventually the bivalent vaccine will be brought to the UK and can help scores 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