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| Stephanie Payne with Tayler, left, who has cystic fibrosis, and his younger brother Jordan. Times photo Wayne Martin. |
The three-year-old’s big brother Tayler has cystic fibrosis (CF), a genetic condition that thickens the body’s mucus and blocks tiny tubes in various organs.
About one in 3000-3500 children in New Zealand are born with CF and need regular physiotherapy to keep their airways clear, prevent lung damage and reduce infection.
When Jordan was born his parents decided to save his umbilical cord blood, which is full of stem cells that could help with his brother’s illness in the future.
Watching Tayler tear around the house with his best mate in tow, it is easy to forget he has a life-threatening illness.
Twice a day the four-year-old is given chest percussion by his mum Stephanie, which involves tapping his chest to shift the mucus from his lungs.
“He’s a little star,” she says. “He just sits there and takes it all.
“But he’s at the stage where he asks why he has to have physio and Jordan doesn’t.”
A hand sanitiser unit positioned at the Paynes’ front door is a telling sign of the care the family takes to safeguard Tayler’s health.
When the little boy develops a cough or cold he has to be treated with antibiotics as soon as possible to stop the infection in its tracks.
“Cystic fibrosis is a lifetime illness,” says Stephanie.
“They are born with it and they carry it through for the rest of their lives. It’s not ‘if’ he ever gets unwell, it’s ‘when’.”
However, she and her husband Brett try to resist the urge to wrap their son up in cotton wool as much as possible, so he can have a normal childhood.
“Bacteria is a big concern,” Stephanie told the Times.
“You have to be mindful, but you can only do the best you can. And we’ve had a lot of luck with him.”
A few days a week Tayler goes to Superstart Pre-school in East Tamaki, which has been incredibly accommodating of his needs.
In the past, the centre has waived the family’s childcare fees and donated the same amount from its own pocket to the Cystic Fibrosis Association.
“They are just amazing,” says Stephanie. “The kindy has been so supportive. I feel he’s in such safe hands and they have an extremely good safety policy.”
The mum-of-three is running a fundraiser at the Pakuranga Scout Hall from 10am-2pm this Saturday to put the spotlight on Cystic Fibrosis Awareness Week, which runs from August 15-21.
It will feature a white elephant sale to raise money and awareness of CF, and a gala with entertainment such as bouncy castles, face painting, raffles and a sausage sizzle.
“Everything goes to the association,” says Stephanie. “Usually the money is used to buy equipment and medication. A nebuliser is really expensive, and its maintenance is expensive too.”
Quality household items, clothes and toys are being sought for the bric-a-brac sale at 474 Pakuranga Road, and they can be dropped off at Stephanie’s home.
“For me, it’s more important to raise awareness than money, because so many know so little – if anything – about cystic fibrosis,” she says.
“The hard thing is they look so well on the outside.”
She hopes advances in medicine will one day make use of Jordan’s banked stem cells and a difference to the life of her eldest son.
“I’m so optimistic about his future now,” she says.
“There’s a lot of research now, and the possibility of Jordan saving his life one day.
“You talk with other parents and you become more hopeful.”
Source: Times Newspapers, New Zealand, 8 August, 2011
