Doctors tried to tell me my five-year-old daughter was getting her period… then we got rare diagnosis

For most eight-year-olds, life consists of playdates, schoolwork, and the occasional squabble with their parents in front of the screen.

But for Daisy, instead of a schedule tied to broadcast times of her favorite TV shows, her life revolves around medical visits and ‘a lot of time spent in her hospital bed with her iPad’ as she struggles with a very rare diagnosis.

The teenager has Human Papilloma Virus (HPV). However, for unknown reasons, he reacted differently. Daisy has had to undergo eight surgeries to date and faces many more.

Doctors say he may have caught the virus from a public toilet seat.

It’s a medical battle that began in 2023 when five-year-old Daisy came home from nursery at Greenways Primary School in Southend-on-Sea with ‘blood in her knickers’.

‘Totally panicked’, his mother Kara took him to the emergency room as his thoughts jumbled. Daisy is admitted for the night.

The family’s confusion continued into the morning after the doctor discounted the bleeding due to an early start to her menstrual cycle and sent her back to their home in Southend-on-Sea, Shoeburyness.

“I didn’t think it was right at the time,” Kara Hince, 29, told the Daily Mail.

Daisy, who was taken to the hospital by her mother Kara, was discharged from the hospital the next day by doctors upon the diagnosis that her menstrual period had started early.

‘In our family, we all started menstruating at very normal ages. But this was the first time. I had to trust what I was told and wait to see what would happen. “He was a normal, healthy child.”

Then two weeks later the same thing happened again and the symptoms returned.

‘I immediately took him to the hospital and they tried to send us to the general practitioner,’ says Kara.

But Kara’s mother, a breast cancer clinic nurse specialist, stepped in and asked a consultant at Southend University Hospital to examine Daisy.

‘They came and examined him and within 24 hours we were at Great Ormond Street Hospital,’ said Kara. A person who raises funds for his young daughter to go to Disneyland via GoFundMehe says.

He later learned that his mother had ‘protected’ him from the possibility of Daisy getting cancer; because there were small growths on the female student’s body, which were overlooked by her family as a skin rash.

‘They sent him to a cancer specialist and a urologist,’ explains Kara.

‘He went upstairs, they put him to sleep and did a biopsy. When he woke up they told me they thought he had cancer.

‘They were 90 per cent sure it was cancer; or it was something weird and wonderful they’d never seen before.’

This situation caused Kara to instantly ‘devastate’ and added: ‘Life has come to a complete halt.

Twenty-nine-year-old Kara shares Daisy with her ex-partner Steven Johnson, who both went to Great Ormond Street Hospital in London for doctor’s results

‘I was 17 weeks pregnant and it was supposed to be a wonderful, happy time. And the day I was 17 weeks pregnant I was told they thought Daisy might have cancer.’

During the week-long wait for results, Daisy was being ‘moved all over the house’ and ‘having difficulty walking’ due to the catheter doctors installed.

The family, including Daisy’s father Steven Johnson, 37, went to Great Ormond Street Hospital in London for the results.

They were told that it was not cancer, but instead Human papillomavirus (HPV), a viral infection that is usually sexually transmitted.

This condition causes painful growths, bleeding and ongoing complications in the little girl.

According to the International Papillomavirus Society, approximately 80 percent of people will have HPV, which is spread by skin-to-skin contact, at some point in their lives.

‘Honestly I’m very relieved it’s not cancer. But this relief was short-lived as my thoughts began to question how he got it. “How did a five-year-old get this?” says Kara.

‘This is heartbreaking. It’s not their fault. “But why? Why any child, but why my child?” ‘I started questioning.’

The family want to take Daisy and two-year-old Theodore to Disney in America, as a child ‘spent too much time on her iPad in her hospital bed’ watching Disney shows and movies.

Due to concerns about potential abuse, several family members took turns asking if anything had happened to Daisy.

But he repeatedly said: ‘No, no one has harmed me except the doctors who have been looking after me for the last few days.’

The family and doctors remain in the dark about how Daisy caught the virus, and it has been suggested that Daisy may have caught the virus from a public toilet.

“The only suggestion the doctors gave me was that she might have gone to a public restroom and used the same restroom used by someone with HPV,” Kara explains.

‘Most people don’t even react. But for some reason something in his body reacted and caused all this.’

By the time Daisy was eight, she had eight surgeries, each requiring a catheter, but each time the growth returned.

‘Every time it would flare up, it would bleed and the growths would reappear,’ says Kara.

‘We’ll have to go to Southend University Hospital, A&E. ‘They would then transfer him 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 become a teacher, a nurse and a football player when she grows up.

After the growths returned repeatedly, the London hospital tried intensive treatment last July, in which the drug Avastin was administered through a port inserted into the chest.

Widely used as a way to ‘starve’ tumors in cancer patients, doctors hoped the treatment would reduce the growths; That was until high levels of protein were found in Daisy’s blood.

Doctors later stopped the treatment due to concerns about its effect on his kidneys.

‘They don’t know what happened right now. “He started producing protein as a side effect of the treatment,” says Kara.

‘He went to his grandfather for his last treatment on December 22. She was very excited because she had never taken him to treatment before. ‘They always do a urine test before they start treatment and it shows really high protein levels.’

Doctors were left “stunned” and his case was labeled “mysterious” as scans showed “no visible problems” with his kidneys.

The emotional strain has turned Daisy into a ‘different child’, her mother says.

‘He handled it so well when they put him to sleep. ‘We have never seen any child handle the situation this way,’ says Kara.

Despite her difficulties and a 50 per cent school attendance rate, Daisy ‘keeps up and doesn’t fall behind academically’ – as reflected in her latest school report

‘He used to laugh when they put him to sleep, but over time it took a toll on him mentally.’

While doctors are trying to figure out how to treat the child, the child continues to have pain, mainly on his left side.

Kara and her partner Billy Fraser, 28 Fundraising via GoFundMe To take him and his two-year-old brother Theodore to Disney World in America.

This wish stemmed from Daisy’s love of Disney as a child who ‘spent a lot of time in her hospital bed with her iPad’ and her particular love of the movie Inside Out.

“He would watch videos of people going to Disney World, and he would always tell me: ‘If I could go anywhere, I would go to Disney World and America,’” Kara says.

Despite the difficulties in her life and her school attendance rate of 50 percent, Daisy ‘keeps up with school and never falls behind academically’.

‘She is absolutely incredible. ‘The last school report brought me to tears,’ says his mother.

‘I really can’t tell you how proud I am considering everything he’s been through, we are in awe of him.’

Daisy, an avid fan of Arsenal Football Club, plans to be ‘a football player, a nurse and a teacher’, her mother says.

Kara continues: ‘He tells me that I will be a teacher during the day and come home at night and become a nurse. ‘I’ll adapt to football on the weekends.’

Sharon McNally, Interim Chief Nursing Officer at Mid and South Essex NHS Foundation Trust, said: ‘We are very sorry that Daisy’s family felt that Daisy’s care issues in 2023 were initially ignored.

‘We take the concerns raised extremely seriously. ‘We would welcome them to contact our Patient Advice and Liaison Service to discuss what has happened.’