Boy battles mystery chronic lung condition

A five-year-old boy has spent most of his short life in and out of hospital with a chronic lung disease that has doctors baffled.

Riley Smith has suffered through more than 20 operations and his mother Leah-Rose, 24, has now been told she needs to ‘let nature take its course’.

But the devastated single mother is not willing to accept nothing more can be done and is saving up money to fly him from Perth to Melbourne for a second opinion.

Riley Smith, five, has a chronic lung disease that has baffled Perth doctors for most of his young life

He has suffered through more than 20 operations and his mother Leah-Rose (R), 24, has now been told she needs to ‘let nature take its course’

‘I’ve battled with medical staff for years to try get him help and I’m not willing to take that as an answer,’ she told Daily Mail Australia.

Ms Smith was also seeking expensive genetic tests in the hope of finding a diagnosis as her 18-month-old daughter Billie was showing signs of the same mystery illness.

Riley’s health problems began just months after he was born and was ‘in and out of hospital catching every bug you could imagine’.

The devastated single mother is not willing to accept nothing more can be done and is saving up money to fly him from Perth to Melbourne for a second opinion

Ms Smith was also seeking expensive genetic tests in the hope of finding a diagnosis as her 18-month-old daughter Billie was showing signs of the same mystery illness

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He developed persistent ear infections that were not fixed even with multiple surgeries to insert tiny metal tubes in his eardrum to drain the fluid.

The tubes, called grommets, also left scar tissue on his eardrum that worsened the hearing loss he was born with.

Two years ago doctors found a thick build up of mucus in his lungs that gave him a persistent cough and no antibiotics could fix it.

Riley now undergoes IV antibiotics every eight to 12 weeks that requires him to stay in hospital for up to three weeks at a time.

The family of three at home where Riley has spent less of his short life in than at hospital

Riley’s health problems began just months after he was born (pictured aged three months) and was ‘in and out of hospital catching every bug you could imagine’

Riley cuddles with his baby sister Billie during one of his hospital visits

‘He needs oral antibiotics daily to maintain health but his health decreases rapidly when he comes off the IV treatment,’ Ms Smith said.

‘He becomes tired easily, has a chronic moist cough, bruises easily, still gets chronic ear infections, and a simple cold lands him in hospital.

‘I think we have spent more time in hospital than at home.’

The little boy also needs chest physios and to use a nebuliser twice a day.

‘He needs oral antibiotics daily to maintain health but his health decreases rapidly when he comes off the IV treatment,’ Ms Smith said

Riley becomes tired easily, has a chronic moist cough, bruises easily, still gets chronic ear infections, and a simple cold lands him in hospital

Riley receives a gift to cheer him up while he’s in hospital

Ms Smith said Riley was so traumatised by constantly being sick and painful treatments that he has frequent anxiety attacks.

‘At his age you go into fight or flight mode and while usually he runs away from the situation he can’t when he’s at school,’ she said.

‘When contained to a small room it triggers memories of hospital and he has an outburst, so he has been suspended from school twice.

‘He sees a psychologist now to try work on it as it affects his day-to-day living.’

The superhero fan poses alongside a man dressed as batman who visited the hospital

Riley smiles through one of his frequent IV treatments

Ms Smith said Riley was so traumatised by constantly being sick and painful treatments that he has frequent anxiety attacks

‘He always missed at least a term of school each year due to medical appointment, hospital admission and surgery so he’s now behind in school work,’ she said.

‘He needs occupational therapy, speech and one on one tutoring to try bring him up to speed.’

Ms Smith said she lost her job after three years because she couldn’t work on Saturdays and missed days for Riley’s surgeries.

An IV drip delivers antibiotics directly into Riley’s chest

Ms Smith was forced to move Riley to Mosman Park School for Deaf Children, about 50 minutes drive away from their home

‘I only worked two days a fortnight but it’s $300 I’m missing a fortnight now. And half of Riley’s medications aren’t covered under Medicare,’ she said.

‘It’s only me and the kids so it gets hard at times. Nothing ever seems to go to plan.’

The determined mother said she was saving up to bring Riley to Melbourne for a second opinion and genetic testing to look for a diagnosis.

‘There’s so many unknowns, the doctors can’t seem to find a reason as to why he’s sick but are saying that it’s not normal,’ she said. 

Ms Smith said she lost her job after three years because she couldn’t work on Saturdays and missed days for Riley’s surgeries

Riley undergoes his IV antibiotics therapies joined by a Minnie Mouse toy in a doctor’s coat

‘Without them I don’t even know if I would still have Riley but I think we just got to a stage where they don’t have the tools that larger hospital over east have so we are at a dead end.’ 

She said her age and that she was a single mother made it more difficult to advocate for her son and get him the right tests.

‘I think it’s been half my problem when trying to be heard. But my age means nothing when it comes to my ability to be a mother,’ Ms Smith said.

‘If I’ve learnt anything over the years it’s that mother knows best.’

Ms Smith with some of the many needles Riley has to be injected with

But the youngster has been trying to keep his chin up, asking his mother to help him raise money for charity.

‘On the way home from school last week he herd an add on the radio about the Everyday Superhero fundraiser and asked me to sign him up,’ his mum said.

He has raised more than $1,100 so far and his mother said if they made it to $1,500 she would abseil down the side of a building dressed as Spiderman.

The determined mother was saving up to bring Riley to Melbourne for a second opinion and genetic testing to look for a diagnosis

The brave youngster was trying to keep his chin up, asking his mother to help him raise money for charity.