How an 11-year-old boy who complained of a tummy ache was eventually diagnosed with a dangerous rare illness – after his symptoms left doctors so baffled they asked mum if she’d POISONED him

An 11-year-old boy has been diagnosed with an illness so rare that baffled doctors initially questioned his mother to see if she had drugged him. 

Gus Graham's mother Lisa took him to a doctor in Darwin after he complained of having a stomach ache at school in February 2019. 

Confused by the little boy's fever, the GP insisted he go to hospital for an ultrasound, where he was forced to undergo a series of tests as doctors couldn't diagnose his bizarre symptoms. 

Gus, who had been perfectly healthy and looked well was eventually diagnosed with Wilson's Disease, meaning his body wasn't breaking down copper properly, and was forced to spend six weeks in hospital. 

His worried mum was even accused of drugging her son and giving him chemicals, after startling results following a liver test.  

Gus was eventually diagnosed with a rare genetic condition called Wilson's Disease, meaning his body wasn't breaking down copper properly, and a total of six weeks in hospital.

Gus Graham's mother Lisa noticed her only child began to feel a bit off and felt 'pain in the belly' after her husband Trev went away for FIFO work in February 2019

Gus' mother Lisa (pictured together) got a call one day that Gus wasn't feeling well and to pick him up at school. Their GP told them they needed to go to the hospital

'The doctor questioned me about what I had given him, if I had drugged him, whether I had given him chemicals or gardening stuff,' she said.

'They did it straight away because when they took his bloods and saw his liver function test was through the roof.

'They ask in a very nice way but it scared me. I tried to make a joke of it because that is how I cope.' 

Mrs Graham became so concerned that she asked the pediatrician to check for cancer, fearing the worst after they were told to go to a major hospital in Adelaide.

'I was certain it was cancer before she told me the results hadn't come back yet and that is why they were sending us 3,000km away,' she said. 

Mrs Graham's mother had put out a call out on social media to try and determine any conditions in the family the day after Gus was admitted to hospital - and a distant relative had been diagnosed only two weeks earlier with the disease.

A doctor questioned Mrs Graham about whether she had drugged her son after seeing his liver function test

After five days of testing, Gus (pictured in a Qantas cockpit) and his mother were flown to a hospital in Adelaide on a commercial flight, as the facility was better equipped

WHAT IS LITTLE GUS' ILLNESS

Gus has Wilson's Disease, which means his body stores a higher amount of copper in his liver, brain and other vital organs.

Most people are diagnosed with the genetic condition between the ages of five and 35. 

Only 720 people in the country have been diagnosed with the illness. 

Copper typically helps in the development of nerves and bones.

It is usually absorbed through food and excreted through bile in your liver.

However for people with Wilson's Disease copper isn't eliminated and instead accumulates. 

The condition is only manageable.    

Symptoms can include: fatigue, abdominal pain, jaundice, eye discolouration, lack of appetite, fluid build up and issues with muscles and coordination. 

The illness can cause a series of complications such as scarring of the liver, liver failure, neurological issues, kidney problems and issues with blood.

'I can't remember the exact feelings on the day but we did have that inkling it was Wilson's Disease,' she said.

The treatment process started immediately, which worried Mrs Graham as she was concerned about the intense side effects of the drugs. 

'They knew that he needed it - they didn't even want to wait until the next morning,' she said of the doctors. 

The family have endured a difficult time since little Gus' diagnosis. 

One day Mrs Graham found her son unresponsive and unable to talk to her because he had become hypoglycemic - meaning his blood sugar had dropped dramatically. 

'That was scary - but they got him back. He was wide awake before they even got him into the ambulance and sitting up eating lollies,' she said.

'But he had also gone hypothermic so both his temperature and blood sugar had dropped.' 

He was then diagnosed with a partial adrenal insufficiency because of the acute liver failure, and his kidneys and other organs having stopped working.

The scare resulted in Gus being placed on hydrocortisone injections three times a day, which stops him from having hypoglycemic episodes.

This is on top of the four doses of a medication that helps get rid of some of the copper in his liver, eyes and brain, and a diuretic that stops fluid build up in his stomach.

He also takes zinc at bed time, which helps get rid of the copper in the food he is eating or drinking. 

But it was finally in Adelaide where it was discovered Gus (pictured with a Starlight captain)  had Wilson's Disease, which means copper stays in his system and impacts his liver and other organs

On one occasion Mrs Graham found her son unresponsive and unable to talk to her because he had become hypoglycemic - meaning his blood sugar had dropped dramatically - and he was rushed to hospital in an ambulance

Mrs Graham (pictured with her son and husband Trev) said the family tried to ween him off of his hydrocortisone due to side effects, such as low bone density

Mrs Graham said the medications have changed repeatedly and the family have concerns about the hydrocortisone, as one side effect is low bone density. 

Mrs Graham revealed that since Gus' diagnosis  he has broken four bones - including tripping over a rock and breaking his collar bone. 

But a recent attempt to ween Gus off of it left him tired and irritable. 

The family has done all they can in order to ensure Gus has the best access to the medical professionals he needs.

This includes packing up their belongings and moving to Geelong, in Victoria, in December 2019. 

COVID-19 has meant Gus can only see his doctors via Telehealth due to rules about who can be in a hospital.

Mrs Graham said another benefit of moving to Geelong was being close to her family - but due to COVID-19 restrictions in Victoria she hasn't been able to see any of them. 

The family has done all they can in order to ensure Gus (pictured on the family farm in Darwin)  has the best access to the medical professionals he needs - including moving to Geelong

The move was made because if Gus (pictured with his dad) had any issues with varices caused by portal hypotension, due to not having the specialised doctor in NT, Gus would have to be put an induced coma and flown south

However, COVID-19 has meant Gus (pictured with a Starlight captain) can only see his doctors via Telehealth due to rules about who can be in a hospital

Gus has essentially been learning remotely since February, after pulling him out due to concerns regarding COVID-19 and his reduced immunity because of his illness

Despite all this, Mrs Graham says to get through everything the family just keeps on laughing. 

This has been greatly helped by children's charity Starlight - with Mrs Graham calling the organisation 'the blessing any parent could ask for' as they have helped Gus cope with his illness. 

Mrs Graham said during the initial testing to determine what condition was plaguing Gus, he spent a lot of time in the Starlight room playing video games with the captains.

She said the organisation had been a priceless help while the family found their feet in tackling Gus' illness and were still helping them to this day. 

However two of Gus' (pictured in hospital) medical procedures - a liver biopsy and a gastroscope - were delayed due to COVID-19

Gus (pictured in the Starlight room) has essentially been learning remotely since February, after pulling him out due to concerns regarding COVID-19 and his reduced immunity because of his illness

Mrs Graham said Gus would receive letters, games and colouring books, and the organisation even granted Gus a Starlight Wish - backstage passes to the Aus X Supercross Open.

'That was a money can't buy experience. It was just - we were all so happy with it,' Mrs Graham said.

Starlight flew the family from Darwin to Melbourne for the event, putting them up in a two-bedroom apartment in South Bank.

Mrs Graham said the foundation thought of everything - from making sure there was bottled water at the apartment and event for Gus to drink to reduce copper intake, to making sure there was a wheelchair for him in case he got tired.

'Gus didn't know this at the time but Starlight and the Aus X Open had arranged for him to meet Chad Reed and Ricky Carmichael,' she said.

'Gus got to meet two of the big guns - he cried but was so happy all at the same time.'

Starlight granted Gus his ultimate wish - backstage passes to the Aus X Supercross Open. Pictured: Gus' dad Trev, Chad Reed, Gus and Mrs Graham, Ricky Carmichael

Reed did something above and beyond - he took Gus (pictured with the motorcross legend and his dad) for a hot lap on his bike in front of 90,000 people cheering for him

'The best thing about Starlight is they take care of everything - they don't leave a single stone unturned,' Mrs Graham said. Pictured: Gus preparing for his hot lap

Superstar ride Reed even took Gus for a hot lap on his bike in front of 90,000 people cheering for him.

A helmet and a jumper with Gus' number had also been made up for the 11-year-old.

'The best thing about Starlight is they take care of everything - they don't leave a single stone unturned,' Mrs Graham said. 

'They're just so amazing. The smile they put on his face - as a mum you could never ask for anything more.' 

Starlight is launching their Tour de Kids campaign in September, which encourages cyclists to go the distance to raise money for the foundation.

Cyclists are encouraged to jump on the bike every day to inspire donations. 

More information about Tour de Kids can be found here.