A Rotorua mum thought her daughter just had the flu. But within hours a horrifying rare disease took hold of the 9-year-old's body threatening her life. Now Rotorua is taking action to help Valencia and her family, who talk exclusively to Kelly Makiha.

Warning: This article contains images that readers may find distressing


Ene Mikaere looked into the swollen pain-stricken eyes of her daughter lying in a hospital bed with a rare and potentially fatal skin disease ravaging her body.

"It just broke my heart ... yeah I thought she was going to die. I was thinking that but I was trying not to."

Her beautiful 9-year-old girl had within hours been struck down by a heinous skin disease that was sucking the life out of her.

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"Her lips were starting to dry out, they started going yellow, they looked infected and swollen and there was a pussy stream in them, her eyes started going red and blood shot," she said.

Doctors at Rotorua Hospital diagnosed her with SJS (Stevens Johnson Syndrome), a painful disease usually caused by medication that attacks the skin. It affects only one to two in a million but kills one in 10 people who contract it.

Mrs Mikaere picked Valencia up from Owhata Primary School on Monday August 1 because she was feeling unwell.

"She was feeling tired and started getting fevers. I was thinking it was just the flu."

After two days, Mrs Mikaere took her to the doctor, who prescribed paracetamol for a viral chest infection.

Mrs Mikaere closely monitored her but on Friday was concerned she was getting worse so took her to the Emergency Department at Rotorua Hospital.

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During the five-hour wait in the Emergency Department, it was thought she had chicken pox and she was given antibiotics.

Within hours she was covered in lesions and sores, was vomiting constantly and was having seizures. Her lips were dry, yellow and pussy.

Valencia, 9, has burn-like lesions and sores over 60 per cent of her body that will take months to heal and are likely to leave scarring. PHOTO/SUPPLIED
Valencia, 9, has burn-like lesions and sores over 60 per cent of her body that will take months to heal and are likely to leave scarring. PHOTO/SUPPLIED

"Everything was happening so fast. Her eyes were gunky and there were spots all over her body."

Valencia was put in quarantine while they waited for her to be transferred to the children's ward.

Three days later she was transferred to Waikato Hospital because the sores were covering more than 60 per cent of her body and were considered burns.

"It was so horrible. I didn't want her to see me break down. When I did break down, I would go outside and do it," Mrs Mikaere said.

After spending nearly two weeks in Waikato Hospital, she has this week returned to Rotorua Hospital but has a long road to recovery.

There is still a risk of infection and she still needs oxygen at times to help breathe, as the sores inside her mouth hinder airflow. She is also being fed through a tube because she can't eat and has a catheter.

She is being treated with antibiotics and heavy pain relief and doctors are constantly watching her vital organs and trying to prevent infection.

It's been a tough time for her family and the community is rallying to raise money to help them.

Valencia's dad, Karamana Mikaere, was made redundant with the closing of Lumbercube.

Valencia Davies this year before contracting a rare and potentially fatal skin disease. PHOTO/SUPPLIED
Valencia Davies this year before contracting a rare and potentially fatal skin disease. PHOTO/SUPPLIED

Mrs Mikaere has used all her holidays and sick leave at her job at Countdown and the couple, who have five children aged 3 to 11, had to move out of their rental property because it was being sold.

They are bunking down with Mr Mikaere's family as they struggle to get another property because of the city's rental market shortage.

Mr Mikaere spent the weeks after losing his job looking after their other four children while Mrs Mikaere was at their daughter's bedside.

"It was quite hard especially when the bills starting piling up," Mrs Mikaere said.

Countdown had been a great help, giving the family a lot of food, and the Salvation Army had also provided support, she said.

Mrs Mikaere's mother had also flown home from Australia and was acting as Valencia's "nurse" in the hospital and providing great support for her daughter.

Mr Mikaere said he was excited to start a new job this week but the downside was it was in Pokeno.

He said it was the best he could find to support his family and he would travel home in the weekends to see them.

Meanwhile, it is a waiting game for Valencia and her family. The doctors have not told them how long it will be before she is fully recovered and they are still unclear as to how exactly she caught the disease.

But as the community rallies around the family to help, they say they couldn't be more grateful.

"We haven't asked for anything but we have been quite shocked with how people reacted."

Ene and Karamana Mikaere (right) stay strong for their daughter, Valencia. PHOTO/STEPHEN PARKER
Ene and Karamana Mikaere (right) stay strong for their daughter, Valencia. PHOTO/STEPHEN PARKER

FAMILY FUN DAY

The community is being asked to dig deep to help raise money for Valencia Davies and her family at a family fun day next Saturday.

Road to Recovery - Angels for Valencia Fundraiser is being held at Owhata Primary School from 10am to 2pm.

Band Natrule Konexzion will play throughout the day and there will be a performance from Owhata Primary School.

There will be quick fire raffles, a White Elephant, bouncy castle, face and nail painting, games and fitness activities, donation boxes, food stalls, fry bread burgers, sausage sizzle, cake stall and Angels for Valencia for sale.

Organiser Eleanor Mahaki said the event was being put together by the school, Owhata Friends of the School and EBabies Early Learning Centre. Donations and prizes are welcome and can be dropped off at the school or by contacting Mrs Mahaki on (021) 353 267.

Those wanting to donate to Valencia's Road to Recovery can make a deposit here:

https://givealittle.co.nz/donate/Cause/valenciasroad2recovery
WHAT IS SJS (Stevens Johnson Syndrome)
* A rare and potentially fatal skin disease
* It is not contagious
* It is caused by taking one of at least 200 medications including paracetamol and penicillin
* Blisters form inside the body, making it hard to eat, swallow and go to the toilet
* Blisters and sores need to be carefully managed to prevent long-term scarring
* It can strike anyone, although is slightly more common in females
* It starts with flu-like symptoms followed by a painful rash on the trunk and then rest of the body
* Those affected are very ill, extremely anxious and in considerable pain