Lifestyle

Beautiful Bella inspires us to help find a cure

SUPPORT: Family friend and local artist Jimmy Wags with Bella O’Brien.
SUPPORT: Family friend and local artist Jimmy Wags with Bella O’Brien. Trevor Veale

DESPITE looking like an average toddler, the life of Bella O'Brien and her family is anything but.

Bella, aged one, lives with cystic fibrosis, an incurable genetic disease.

After five years of trying, Chrisi and Jason O'Brien fell pregnant with "their gift", Bella, through IVF. But seven weeks after she arrived their world was shattered.

Bella was diagnosed with cystic fibrosis, which primarily affects the lungs and digestive system because of a malfunction in the exocrine system, responsible for producing saliva, sweat, tears and mucus.

There is no known cure and people living with the disease must undergo constant medical treatments and physiotherapy.

The average life expectancy of someone suffering from the disease is 38.

Her mother Chrisi said they faced a long road ahead.

"We do daily physio, she's on pancreatic medication, vitamins, lots of trips to Brisbane to start with and things will change as she gets older and grows up," Chrisi said.

During May, local artist and family friend Jimmy Wags held a raffle to raise money for medical research into the disease.

The raffle of his artwork raised more than $800 and while it's now finished, people are still encouraged to donate online direct to Cystic Fibrosis Australia.

"We're not raising money specifically for Bella as we can make do.

"But people can donate to the research fund if they wish, we would rather the money go toward finding a cure for this disease."

She said there is hope for improvement in the condition but the medication Kalydeco is hugely expensive.

"It costs about $300,000 a year and it's not available on any public funding scheme."

To donate to Cystic Fibrosis Australia visit cysticfibrosis.org.au.

To support the fight to have the Federal Government put Kalydeco on the Pharmaceutical Benefits Scheme, head to change.org and sign the petition at: change.org/petitions/the-australian-government-add- kalydeco-to-the-pbs.

Topics:  cystic fibrosis fund raising woolgoolga



Prime Minister, Cowper still seeks the answers

Cowper MP Luke Hartsuyker with Prime Minister Malcolm Turnbull during last year's election in Lismore.

Cowper constituents call for PM to answer the big issues

Roos prevail in a close finish

The Sydney Swans and North Melbourne fly for a mark at the C.ex Coffs International Stadium. Photo: Brad Greenshields/Coffs Coast Advocate

Kangaroos hold on to win by two points against the Sydney Swans.

Sea Eagles fly high in Nines

Final Hoey Moey Tooheys Coffs Coast Nines 18 February 2017 Geoff King Motors Park. Photo: Brad Greenshields/Coffs Coast Advocate

Macksville scores late to claim Coffs Coast Nines final over Port.

Local Partners

Deadly dog virus outbreak strikes South Grafton

"If your dog lives on one of those streets, I'd almost guarantee they will contract parvo virus if they are not vaccinated."


Jackass crew eye off the Big Banana

WILD SHOW: The Jackass crew  a promise a wild Coffs Harbour show.

Iconic Coffs landmark grabs Jackass crew's attention

Make a Jackass of yourself live on stage

Jackass's Jason 'Wee Man' Acuna on stage during the crew's Fillthy Seppo Tour of Ausralia. The mayhem arrives at the Coffs Harbour on February 23.

Jackass team head to Coffs to wreak havoc

Sizzling Bookfest bargains

CHOCKERS: Lester Platts and Chris Ryland, Coffs Harbour South Rotary preparing for Bookfest April 1-8.

80,000 book will hit the Bookfest tables in April

Why Hollywood’s siding with Brad Pitt over Angelina Jolie

TOWARD the end of last month’s Golden Globes ceremony, the producer of the nominated drama Moonlight made a surprise onstage appearance: Brad Pitt.

Tensions high at pointy end of MKR's round two

Things are really heating up on My Kitchen Rules.

Games are being played around the My Kitchen Rules table

Jungle Jay sent packing from I'm a Celebrity

I'm A Celebrity ... Get Me Out Here! contestant Jay Laga'aia with Keira.

BIG friendly giant Jay Laga'aia has been eliminated from I'm A Celeb

Carson Kressley brings 'camp' to I'm a Celebrity jungle

"I am not all Park Avenue and daffodils” ... Carson Kressley.

Meet the "campest” campmate to star on I'm a Celebrity.

Jackass crew eye off the Big Banana

WILD SHOW: The Jackass crew  a promise a wild Coffs Harbour show.

Iconic Coffs landmark grabs Jackass crew's attention

Star Wars: The Last Jedi mystery already solved

FILE- This undated file photo provided by Disney shows Daisey Ridley as Rey, left, and John Boyega as Finn, in a scene from the film, \"Star Wars: The Force Awakens.\" Hasbro said it is changing its Star Wars Monopoly set after an 8-year-old girl became upset that Rey, the movie's female heroine, was not included as a figure along with Darth Vader and Kylo Ren. (Disney/Lucasfilm via AP, File) MANDATORY CREDIT

A key mystery surrounding the title of episode eight has been solved

Kids' game "full of f**king paedophiles" according to dad

A mortified dad has expressed serious concerns over an online game

Potential home buyers punished for doing the 'right thing'

Should I go to university or buy a house?

Bidding could start at $1.4M for sought after property

Farrell McCrohon's Jojo Newby rides on a property recently listed at Buccarumbi

One of largest rural properties on market to go under hammer today

An exclusive private retreat

STUNNING: This North Sapphire Beach home is the ultimate in beach-side living.

An exclusive home in an exclusive address

What $11.9m can get you on Coast's most exclusive street

29-31 Wyuna Drive Noosaville Qld 4566

This is what a cool $11.9m can get you

How a first home buyer built house with no deposit

NEARLY THERE: Construction on the first house to home orphans at Umoja began in January.



Photo Contributed

His home will be completed later this year.

Ready to SELL your property?

Post Your Ad Here!