A five-year-old girl whose excruciating pain was dismissed by 30 doctors discovered she was actually suffering from a ‘Lyme-like disease’.
Little Genavieve Jackson, from Canberra, fell seriously ill after she was bitten by a tick at Sydney’s North Narrabeen headlands in September 2012.
But just two weeks later, the young girl started experiencing flu-like symptoms, including headaches, fatigue, achy muscles, and a sore throat.
Speaking to Daily Mail Australia, her mother Marie Huttley-Jackson revealed they were accused of being ‘terrible parents’ and their daughter was ‘faking’ her illness.
Genavieve Jackson (pictured with her mother Marie) discovered she was suffering from ‘Lyme-like disease’ 20 months after she was dismissed by 30 different doctors
The then-five-year-old girl was taken to hospital when she suffered from excruciating pain
‘It was heartbreaking,’ Ms Huttley-Jackson said.
‘She tried to walk on her sore feet but would just collapse. All these doctors thought she was having this delusion. It was one of the saddest times.’
Her condition started to deteriorate within weeks after getting a tick bite.
‘She had a tick bite on her right shoulder and my husband just pulled it out. We didn’t think anything more than that,’ the mother-of-three said.
The family met with 30 doctors – but they would misdiagnose her with a different ailment from juvenile arthritis to connecting tissue disorder or dismiss her pain.
‘Over 18 months, we went from one doctor to another,’ she said.
‘It was quite frustrating. She was getting worse and worse. It was terrible, she started off with sore feet, and then she couldn’t sleep at night.
‘The pain would flare up so she couldn’t walk. I was picking her up from school and having to carry her to the car by the hip because she was in a lot of pain.
‘There was clearly something wrong with her but no one would help us.’
The young girl started experiencing flu-like symptoms, including headaches, fatigue, achy muscles, and a sore throat
Her mother Marie said her daughter couldn’t sleep at night because of the achy muscles
But things took a turn for the worse when Genavieve started experiencing numbness in her face for an entire year and she was also left bed-ridden.
‘There was one morning, I patted her cheek trying to wake her up but she wouldn’t -that was terrifying,’ Ms Huttley-Jackson recalled.
‘She was numb in the face for a year. We took her to a neurologist where they stuck a needle in her cheek and she couldn’t feel a thing.’
‘But they said she was faking it. It was absurd. We had some dark moments. She was even paralysed and we took her to the hospital but doctors couldn’t find a reflex.’
Far from getting better, the family desperately tried to get their daughter to the hospital on several occasions but Genavieve was repeatedly sent home.
Far from getting better, the family desperately tried to get their daughter to the hospital on several occasions but Genavieve was repeatedly sent home
‘We were so worried and getting really desperate because Genavieve was so unwell,’ she said.
Ms Huttley-Jackson said they were also accused of being ‘terrible parents’ and their daughter was simply making up the illness.
Around 20 months later, one of their friends who is a naturopath suggested their daughter could be suffering from Lyme Disease.
But when the family met with doctors in Australia, they told them the disease ‘doesn’t exist’ and they refused to test for it.
After googling about the disease, Lyme Disease Association of Australia put the family in touch with US doctors who specialised in the condition.
Ms Huttley-Jackson (pictured with her daughter Genavieve and husband Carl) said they were also accused of being ‘terrible parents’ and their daughter was simply making up the illness
Now, five years on, little Genavieve is full of energy after she was prescribed antibiotics
Following test results, they discovered the girl was suffering from a Lyme-like illness.
As she was placed on antibiotics, Genavieve started showing signs of improvement.
Now age 10, she no longer needs her medication.
‘She’s amazing. There are days where she’s a little run down but she no longer has any neuropathological symptoms,’ her mother said.
‘Genavieve isn’t numb anymore, she doesn’t get headaches or a sore throat. We’re not sure if the bacteria will come back but we keep a close eye on her.
‘Since then, she has been really good, and there hasn’t been any trouble. She’s a lot energetic.’
And while their daughter hasn’t been officially diagnosed, the family wanted to share their story to raise awareness about the condition.
‘We’re optimistic but this disease still doesn’t have a name so we don’t know for sure what’s going to happen next,’ she said.
‘Something has to be done to fix this problem. There are a lot of people in this position but they are too sick to speak out.’