Nine-year-old boy Scott Gerini has raised more than $75,000 for Telethon’s sick children over the years but now he faces his own very serious health struggles from what his family suspect is the highly contentious illness, ‘Lyme Disease’, which medics claim doesn’t exist in Australia 

In 2010, four-year-old Scott Guerini wanted to ‘help sick kids and babies’, so he decided to walk 24km, collecting donations for Perth’s Telethon along the way. “Scott’s Great Walk” became an annual event which has morphed into a 42.915km marathon, from his father’s Southern Cross wheat farm to the local sports oval.

Over the years, miners from Cliffs Natural Resources and junior footballers have joined Scott on parts of the walk, and in 2014, police escorted him with sirens and flashing lights for the last few kilometres. In five years, Scott has battled wind, rain and freezing temperatures to raise over $75,000.

Ironically, Scott is now one of those ‘sick kids’. In November 2013, his mother, Nicole, noticed Scott scratching the backs of his legs with his shoes while he stood in the bush in Kings Park. The following day he complained to her of tiredness and queasiness, but refused to miss school.

In five years, Scott has battled wind, rain and freezing temperatures to raise over $75,000.

When he arrived home he stripped off his uniform and curled up in bed – an unusual occurrence for Nicole’s “energiser bunny”. Although he experienced cold sweats, Nicole says his temperature and breathing were normal. When she couldn’t rouse him for dinner, she became concerned. The next morning she noticed a bulls-eye rash on Scott’s swollen legs. The local chemist admitted he had never seen anything like it but told Nicole it was probably an allergic reaction and prescribed antihistamine.

The rash disappeared in a matter of days but, according to Nicole, debilitating fatigue, daily headaches and agonising stomach pain continued to plague Scott. Other symptoms he has experienced and continues to experience, in varying degrees of severity and regularity, include loss of bladder control, 40 degree temperatures and hallucinations, dizziness, stinging eyes, a crawling sensation over and under his skin, an inability to focus, aggressive and erratic behavioural changes, tingling in limbs, numbness in fingers and hands, loss of motor skills, memory lapses, unconsciousness, tremors, nausea, anxiety and ‘popping’ in his brain. Scott also suffers from pains in his leg, chest, neck and upper spine.

Nicole says that in other countries Scott’s symptoms are enough for a clinical diagnosis but very few Australian GP’s will risk their reputation to diagnose Lyme Disease.

Within 16 months Scott underwent countless blood tests plus an MRI and EEG scan, and visited a range of specialists including a gastroenterologist, a neurologist, a paediatrician and finally a specialist of infectious diseases who, Nicole says, all concluded Scott was ill but were at a loss to explain why.

Nicole felt increasingly frustrated until early in 2015 when a friend suggested the possibility that Scott was suffering from Lyme Disease. Nicole admits never having heard of it, but her research uncovered a notable symptom – a bulls-eye rash. Armed with this information Nicole returned to the doctors but says, “Because we hadn’t travelled to the areas they believed was necessary to pick it up, they weren’t terribly concerned with the evidence that we presented to them, and the connection that it had to Lyme.”

A 1994 tick research study, ‘Lyme disease: a search for a causative agent in ticks in south-eastern Australia’, which failed to find conclusive evidence of the bacteria that causes true Lyme Disease, has resulted in the prevailing viewpoint that this disease does not exist in Australia. Nicole disagrees and laments, “As with many things, a lot of the time you don’t know about something until it affects you. This is very much the case for us. I didn’t realise how many people were affected. The difficulties that they face. It’s heartbreaking.”

As Scott’s health deteriorated, his absences from school increased, his school sports were cancelled and he lacked the energy to participate in swimming lessons with his classmates. Nicole finds the more he rests, the better his body seems to cope. She says hot showers and heat packs soothe his aches and pains, and excluding gluten, dairy and reducing his sugar intake, appears to ease his symptoms.

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Scott has yet to meet someone his own age who is experiencing similar health issues and even though he’s a fighter, Nicole admits that it’s starting to affect him emotionally. She is grateful for the monthly support group she and Scott attend. “It’s good to be around people who are supportive and will listen to you. They’re in the same position, so they’ve been through all the same things. They know exactly how you’re feeling.”

Waiting lists to see a certain GP who treats over 400 patients in Perth with Lyme-like symptoms, are months long.

Nicole says Scott has gone from a healthy child to one who never feels well and he doesn’t understand why no one seems willing to help him. This feeling propelled him to write a letter to then Prime Minister, Tony Abbott, stating, “It makes me feel worried and sad. I just want to feel better. Please, please, please help me and everyone else who is suffering the same way I am.”

In a media release dated 30th June 2015, the Lyme Disease Association of Australia (LDAA) were hoping that new research released on 25th June 2015 by Murdoch University in the journal, Parasites and Vectors, which they believe provides “scientific evidence that Lyme-like pathogens are present in Australia” will persuade the Australian Government to rethink their current stance.

Nicole says that in other countries Scott’s symptoms are enough for a clinical diagnosis but very few Australian GP’s will risk their reputation to diagnose Lyme Disease. She says waiting lists to see a certain GP who treats over 400 patients in Perth with Lyme-like symptoms, are months long. Scott finally secured an appointment in April 2015. It cost Nicole $3000 to send her son’s blood to Sydney and Germany for conclusive testing which detected rickettsia and bartonella with further tests pending. Nicole says, “It shouldn’t be this hard to get your child healthy.”

 

Last year’s Telethon walk was extremely difficult for Scott…“ It’s like glass is sticking through his feet or that he’s got rocks in his shoes, those kinds of sensations.”

She adds, “He’s got all this going on but he’s not letting it stop him. He’s still going to school, he’s still doing his walk, he is still contributing to society. It’s nothing to fear. People who have this [disease] are still people. They deserve better”. Last year’s Telethon walk was extremely difficult for Scott. Nicole says, “We had lots of rests, massages and shoe changes because of the pain. It’s like glass is sticking through his feet or that he’s got rocks in his shoes, those kinds of sensations.”

This year he has been named the Telethon Little Ambassador and, determined not to let anyone down, he completed the marathon in 11 hours and 32 minutes. Nicole says, “He found the recovery a lot harder than previous years. [He] couldn’t even get out of bed two days later to eat dinner. He was completely washed out.”

This year he has been named the Telethon Little Ambassador and, determined not to let anyone down, he completed the marathon in 11 hours and 32 minutes.

While Nicole discusses treatments, she is reluctant to pump Scott full of drugs while his body is already overloaded, possibly causing other problems down the track. Scott continues his fight against the bugs that have invaded his body with the courage and determination that propelled him to help other ill children.

Avoiding Tick Bites

  • Wear a hat, long sleeved shirts and long pants tucked into socks.
  • Spray Insecticide containing permethrin on clothing and shoes.
  • Apply Insect repellent containing DEET to bare skin (DEET is toxic to children).
  • Avoid brushing against long grass and shrubs.
  • Wear light coloured clothing to spot ticks.
Author

Tania Connolly is a freelance writer who has been published in a variety of magazines. Her passion is people and sharing their inspirational journeys. With a husband and two teenagers life is hectic but she wouldn’t want it any other way.

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