ONE of the first patients to stay in the new children’s hospital is likely to be Toby Gibson from Mt Helena.
Toby looks like any other seven-year-old boy but behind his cheeky smile is a battler with an incurable disease.
He has Cystic Fibrosis and is fighting a severe cough and infection.
In his short lifetime, invasive procedures, hospital stays and appointments have become a way of life and despite the setbacks, he continues to stay on track developmentally.
Mum Melissa praised staff at Little Possums childcare centre in Mundaring where he began his education and Mt Helena Primary School, which he currently attends.
“The teachers are very good about his medication and so supportive,” she said.
“He is now in Year 2 and because of his illness has missed a fair bit of school.
“The side effects of his medication wear him down and he gets very tired.”
After years of treatment, a portacath is used instead of a picc line to administer antibiotics because his veins collapse.
The medicine keeping him alive over time is slowly damaging his liver and kidneys.
“About 50 per cent of patients make it past the age of 18,” Melissa said.
When Toby is fighting an infection, he also requires three bouts of daily physio administered at home by his family.
“Cystic Fibrosis is not something you can see and to many people he probably looks fine, but I notice the dark circles under his eyes and he becomes very pale,” Melissa said.
“Most of his energy is used simply breathing.”
Toby was admitted to hospital with a double hernia two days after he was born and a month later came the diagnosis of Cystic Fibrosis.
His mother did not know she was a carrier.
The most common genetic condition impacts every organ in the body but mostly impairs the lungs where it causes a build-up of thick, sticky mucus prone to infection.
One baby is born with the disease every four days and from birth, constant medical treatments and physiotherapy is required.
Melissa said because Toby is liable to infection, everyday decisions are affected because of the potential consequence.
“Simply planning a holiday such as a camping trip, we have to consider things like the risk of bacteria in the water,” she said.
“They say don’t wrap them up in cotton wool, but we’re walking a tightrope because there are lots of ways to catch an infection.”
She said the family would be lost without the support received from Cystic Fibrosis WA (CFWA).
“There needs to be a cure for CF, no child should have to go through what my son has gone through,” she said.
May 25 is 65 Roses Day, the day when CFWA aims to sell 15,000 roses to support research into Cystic Fibrosis.
To buy roses, volunteer or donate visit https://www.cfwa.org.au/65roses.
CF affects about 400 people in WA
Around 190 of those are aged under 18
Over 1 million are carriers in Australia
Places to buy a red rose include:
Telstra stores in Perth
Murray Street Mall, Perth