For most eight-year-olds life consists of playdates, schoolwork and the occasional tussle with parents over screen time.
Yet for Daisy, instead of having a schedule hinged on the show times of her favourite TV shows, her life is based on medical visits and ‘a lot of time on her iPad on a hospital bed’ as she battles an ultra-rare diagnosis.
The youngster has Human Papillomavirus (HPV). But, for unknown reasons, she has reacted differently. To date, Daisy has been forced to undergo eight surgeries – and is faced with more.
It is a medical struggle that started when a five-year-old Daisy came home from her nursery – Greenways Primary School in Southend-on-Sea – in 2023 with ‘blood in her knickers’.
‘Completely panicked’, her mother, Kara, rushed her to A&E, as her thoughts spiralled. Daisy was admitted for the night.
The family’s confusion continued into the morning, after a doctor dismissed the bleeding as her starting her menstrual cycle early and sent her back to their home in Shoeburyness, Southend-on-Sea.
‘I just didn’t feel that was right at the time,’ Kara Hince, 29, tells the Daily Mail.
‘We all started our periods at very normal ages in our family. But it was the first time it happened. I just had to trust what I was being told and wait to see what happens. She was a normal, healthy child.’
Then, two weeks later, it happened again and the symptoms returned.
Daisy came home from nursery at Greenways Primary School aged five years old with ‘blood in her knickers’
Daisy was rushed to hospital by her mother Kara, where she was admitted for the night and dismissed the next day by doctors over the diagnosis she had started her menstrual cycle early
‘I took her to the hospital straight away and they tried to send us to the GP,’ Kara recounts.
But Kara’s mother stepped in, who is a breast cancer clinical nurse specialist, and requested that a consultant at Southend University Hospital examine Daisy.
‘They came and examined her, and within 24 hours we were at Great Ormond Street Hospital,’ Kara, who is fundraising for her little girl to go to Disneyland through GoFundMe, says.
She later found out her mother was ‘shielding’ her from the possibility Daisy may have cancer. As the schoolgirl also had small growths on her body, which had been overlooked by her family as skin flaps.
‘They sent her to see a cancer specialist and urologist,’ Kara explains.
‘She went up and they put her to sleep and performed a biopsy on her. When she woke up, they told me they thought she had cancer.
‘They were 90 per cent sure it was cancer – or it was something weird and wonderful that they had never seen before.’
This caused Kara to immediately ‘break down’, adding: ‘Life completely stopped.
Twenty-nine-year-old Kara shares Daisy with her ex-partner Steven Johnson, who both travelled to Great Ormond Street Hospital in London for the doctor results
‘I was 17 weeks pregnant and it was meant to be an amazing, happy time. And on the day I turned 17 weeks pregnant, I was told they thought Daisy might have cancer.’
During the week-long wait for results, Daisy was ‘carried everywhere’ at home because of a catheter that had been inserted by doctors, leaving her ‘struggling to walk’.
The family – including Daisy’s father Steven Johnson, 37 – travelled back to Great Ormond Street Hospital in London for the results.
They were told it wasn’t cancer but, instead, it was Human papillomavirus (HPV) – a viral infection typically associated with being sexually transmitted.
The condition causes painful growths, bleeding and ongoing complications for the little girl.
Around 80 per cent of people will have HPV at some point in their lives, which is spread by skin-to-skin contact, according to the International Papillomavirus Society.
‘Obviously I was massively relieved that it wasn’t cancer. But that relief was very short-lived, because my thoughts started questioning how she got it. How has a five-year-old got this?,’ Kara says.
‘It is heartbreaking. It is not their fault. I started questioning, “But why? Why any child, but why my child?”‘
The family want to take Daisy – and two-year-old Theodore – to Disney in America, as a child ‘who spends a lot of time on her iPad in a hospital bed’ watching Disney shows and films
With anxieties around potential abuse, several family members took turns to ask Daisy whether something had happened.
However, she repeatedly said: ‘No, other than the doctors when they’ve been looking at me over the last few days, no one has hurt me.’
The family, and doctors, remain unaware of how Daisy caught the virus, with suggestions that she may have picked it up from a public toilet.
‘The only suggestion that the doctors gave me is that she may have gone to a public toilet, and used the toilet someone with HPV had used,’ Kara explains.
‘Most people wouldn’t even react. But for some reason, something in her body reacted and caused all of this.’
By the age of eight, Daisy has undergone eight operations, each time requiring catheters – and yet the growths returned each time.
‘She would bleed and the growths would come back each time she flared up,’ Kara says.
‘We would have to go to Southend University Hospital to the A&E. They would then refer her to Great Ormond Street Hospital, and we would normally be there within a day or two.’
Daisy is an avid Arsenal Football Club fan, who plans to be a teacher, a nurse and a footballer when she grows up
After the growths repeatedly returned, the London hospital trialled an intensive treatment last July involving the drug Avastin, delivered through a port fitted into her chest.
Commonly used for cancer patients as a way to ‘starve’ tumours, doctors hoped the treatment would reduce the growths – which it did, until high levels of protein was found in Daisy’s blood.
Doctors have since stopped the treatment due to concerns about its impact on her kidneys.
‘They don’t know what’s going on at the moment. She started producing protein as a side effect of the treatment,’ Kara says.
‘She went for her last treatment on December 22 with her grandad. She was so excited because he had never taken her up for a treatment before. They always do a urine test before starting the treatment, and it showed really high protein levels.’
Doctors have been left ‘baffled’, as scans show there is ‘nothing visibly wrong’ with her kidneys, leaving her case be labelled ‘a mystery’.
The emotional strain has turned Daisy into a ‘different child’, her mother says.
‘She handled it so beautifully when they put her to sleep. We have never known a child handle it the way she does,’ Kara says.
Despite her tribulations and a 50 per cent school attendance, Daisy ‘keeps up and is not falling behind in anything academically’ – which is shown on her recent school report
‘She would laugh as they put her to sleep, but mentally it has taken a massive toll on her over time.’
The child continues to be in pain, mainly on her left side, as the doctors continue to figure out how to treat her.
Kara and her partner Billy Fraser, 28, are fundraising via GoFundMe to take her and her two-year-old brother, Theodore, to Disney World in America.
The wish was sparked by Daisy’s love of Disney, as a child ‘who spends a lot of time on her iPad in a hospital bed’ – and her particular love for the film Inside Out.
‘She watches videos of people going to Disney World and she has always said to me, “if I could go anywhere, I’d go to Disney World and I’d go to America”,’ Kara says.
And despite her life’s tribulations and a 50 per cent school attendance, Daisy ‘keeps up with school and is not falling behind in anything academically’.
‘She’s absolutely incredible. Her recent school report brought me to tears,’ her mother says.
‘I honestly can’t explain how proud I am, considering everything that she is going through, we are just amazed by her.’
Daisy, who is an avid Arsenal Football Club fan, plans on becoming a ‘footballer, nurse and a teacher,’ her mother says.
Kara continues: ‘She tells me, I am going to be a teacher in the day and then I am going to come home and be a nurse at night. I will fit football in on the weekends.’
Sharon McNally, Interim Chief Nursing Officer for Mid and South Essex NHS Foundation Trust, said: ‘We’re very sorry that Daisy’s family feel her care issues in 2023 were initially dismissed.
‘We take any concerns raised extremely seriously. We’d welcome them getting in touch with our Patient Advice and Liaison Service to discuss what happened.’
