Suffering the questions

For eight-year-old Tyler Edwards, one of the hardest things about having cystic fibrosis is answering questions at school from other boys about the number of tablets that he has to take.

Starting with three or four tablets with breakfast, Tyler needs to take up to 16 enzyme tablets a day as well as antibiotics and regular puffs of Ventolin to help him breathe.

His mother Ms Kirsty Edwards of Umina Beach says that, for her son, life was a continuing round of daily physiotherapy, breathing exercises and large amounts of medication.

Despite these difficulties, she says her son copes really well and attends a regular school where the teachers pay him special attention, ensuring that he takes his medicines on time.

For this young Peninsula mum, coping with the costs of caring for her son is a constant challenge, particularly when he has to go into hospital for extended periods due to chest infections.

She is grateful that his medication is now available through the Pharmaceutical Benefits Scheme, which helps with lowering the costs.

In the past, Ms Edwards has had to place her son in Westmead Children's Hospital rather than Gosford Hospital, due to its superior facilities and this has meant increased travel costs for her.

She is hopeful, that, with recent improvements made to Gosford Hospital, she might be able to use their facilities in the future.

Cystic fibrosis is a serious illness that mainly affects the lungs and digestive system.

Patients need constant medical care and daily medications to survive.

For sufferers, a small cold can develop into a life threatening lung infection which can lead to weeks of care in hospital.

Without a cure, often the only chance they have of surviving is to eventually have a lung transplant.

Sadly, this is not always an option or a solution with many sufferers of cystic fibrosis not living into their teens and the average life expectancy being in their mid-30s.

"There are children and young adults in every state and territory of Australia who suffer this debilitating illness," Cystic Fibrosis Australia's chief executive officer Mr Terry Stewart said.

The organisation held a campaign throughout May which culminated in the annual 65 Roses Day on May 28 to raise funds for research and support.

Donation are still being accepted. Call 1800 635 008 or visit www.65rosesday.org.au for more information.

Nitasha Thomson, 31 May 2010 Interviewee: Kirsty Edwards, Umina Press release, 31 May 2010 Terry Stewart, Cystic Fibrosis Australia