LANDSDALE mother Maria Tana and daughter Jayde Kinane (16) take part in the Conquer Cystic Fibrosis Ball every year to raise awareness and funds they hope will lead to a cure for the disease.
The event on Saturday at Crown Perth, started in 2002 when a small group of parents of children with cystic fibrosis (CF) decided to raise money for research into the disease.
“All money raised goes to research and home care,” Ms Tana said.
Her daughter was diagnosed at birth with the genetic disease, which causes a build- up of thick mucus in organs, particularly the lungs and digestive system.
“It pretty much changed our life with all her treatments and ongoing visits to hospital,” she said.
Ms Tana said the treatment included taking 40 to 50 tablets a day and doing physiotherapy twice a day, as well as regular hospital visits.
Jayde, who is in Year 11 at Servite Catholic College, is used to the treatments and fits them into her life.
“To look at her, you wouldn’t know – she doesn’t let it interfere with doing what a 16-year-old wants to do,” Ms Tana said.
“She dances twice a week; she has a part-time job.”
Committee chair Wendy Endebrock-Brown said the pair were perfect ambassadors for the charity.
“Jayde is an exceptional young woman and her mum Maria has been by her side every step of the way, fighting with her and raising awareness of the need for more CF research funding,” she said.
“They have overcome so much together and grabbed every opportunity to raise funds for a cure for Jayde and the 3300 other Australians with this disease.”
Conquer Cystic Fibrosis treasurer Fiona Byrne, whose adult daughter also has CF, has been on the organising committee for Saturday’s ball.
The volunteer-run WA charity has raised more than $2 million and funded more than 28 research projects during its 15-year history.
“Fiona is an exceptional mother and I see her as the backbone of this charity,” Ms Endebrock-Brown said.
“More than anything she’s passionate about keeping the funds flowing to the researchers who have the potential to find a cure for Mairi and the 3000 other Australians with this disease.”
For more information, visit www.conquercysticfibrosis.com.
Conquer Cystic Fibrosis Ball
When: Saturday, May 13, 7pm
Where: Crown Perth, Burswood
May 26 marks 65 Roses Day
SEVERAL northern suburbs shops will sell roses on 65 Roses Day to support Cystic Fibrosis WA and raise awareness of the disease.
Hundreds of volunteers and businesses across WAestern Australia aim to sell 13,500 long stemmed roses to raise money to provide care to children and young adults living with CF and fund research in WA.
The genetic disease affects almost 4000 children and young adults in Australia, and there is still no cure.
The 65 Roses campaign will start with a rose wrapping day on May 25, with various suburban shopping centres then selling roses on May 26.
Those centres include Westfield Whitford City in Hillarys, Telstra Warwick Grove, Wanneroo Central and Yanchep Central.
For more information, visit www.cysticfibrosis.org.au/wa .