By BRIDGET COOK
A CRANBOURNE toddler already has a team of people working to give her the best chance at life, but now they are seeking more support from the local community.
Two-year-old Sophy Mylonas is living with the life-threatening, genetic disease cystic fibrosis (CF).
In people with CF, a faulty gene causes the body to produce abnormally thick, sticky mucus that can clog the lungs, pancreas and other organs and can lead to severe respiratory and digestive problems.
The life expectancy of those with CF is only mid to late 30s.
Sophy’s mother Sally, along with a group of family, friends and co-workers, have set up the ‘Team Sophy’ charity to help raise the funds needed to purchase a potentially life-saving vest designed to help sufferers of CF.
The vest is an air pulse generator that rapidly fills and deflates an inflatable vest, gently compressing and releasing the chest wall up to 25 times per second.
Ms Mylonas said there was no government funding for the vest, which costs more than $14,000.
“So many children miss out on this vest,” she said.
“It is something that will promote increased lung function and clearer lungs, therefore less chest infections and lung scarring which, in turn, makes for a healthier longer life.”
Ms Mylonas said it was the right time to be asking for donations now as this month was Cystic Fibrosis Awareness month and 31 May marks 65 Roses Day, which aims to raise money for vital research and services that help extend the lives of Australians with Cystic Fibrosis.
“People with CF struggle to breathe almost all of the time, it’s almost like drowning on the inside,” she said.
“I give Sophy medication after medication every day.
“I do physiotherapy treatments sometimes several times a day.
“When she gets sick, she could be in the hospital for at least two weeks on IV antibiotics.
“I watch Sophy scream as she gets held down, poked and prodded by the doctors and nurses.
“I watch the tears run down her face as she looks at me as if I’m the one hurting her.”
Ms Mylonas said herself and Team Sophy wanted to do all they could to help give her daughter the best chance at life.
“Even though Sophy is so sick, she always seems to smile though,” she said.
“I listen to the comments from people who think Sophy looks healthy, therefore she must be fine.
“But yet her life is withering away right before my eyes.
“I live in fear because I know one day my daughter will get sick and won’t get better.
“There are so many families that lose their children to this battle.
“I pray every day that I never have to go through that pain, that I won’t have to hold her until she takes her last breath.
“I fight every day for my daughter, right by her side in the hope that I will not lose this battle.
“I am the parent of a child with CF and my biggest challenge is not resenting CF, but learning to live with it.”
Ms Mylonas said she not only wanted to attract donations for Sophy’s vest, but also wanted to organise a family fun day to help raise vital funds for CF.
She urged anyone who could assist in any way to visit their website, www.teamsophy.com, and make a donation or get in contact with them.
