PH is a rare, life-threatening lung disease where the sufferer's blood pressure in the arteries of their lungs elevates.

This places stress on the heart and reduces the amount of oxygen that is able to reach tissues of the body.

In a desperate plea to make the community aware of the deadly disease, Vivienne is supporting an awareness campaign - Pucker Up 4 PH.

PH Australia is on the lookout for someone whose lips could be used to create a blue kiss logo as part of the global publicity and health education campaign in 2010 to raise awareness of the rare disease.

Entries close August 31 and the lips will be featured during the awareness week beginning September 20.

Blue lips (Cyanosis) is a sign of the PH disease.

Other symptoms are chronic fatigue, shortness of breath, chest pain, fainting and swollen ankles and legs.

There is no cure.

Alex underwent heart surgery for a double aortic arch, the day after Valentine's Day in 2005.

"Doctors discovered his double aortic arch after he was in hospital for choking on a carrot.

"After his heart surgery, we were told he had a second condition, completely unrelated to the aortic arch - and it was life threatening," Vivienne said.

Alex was diagnosed with PH before his second birthday and since then he was on two forms of daily medications, one including Viagra which opened up his kinked toes and helped circulate the blood around his tiny body.

Alex's father, Chris said his son rarely complained.

"The worst you would hear from our boy was I am puffed - can you carry me? He was the brightest spark and he didn't stop," Chris said.

Alex became a regular patient of the Mater Children's Hospital in South Brisbane, where he was often a willing subject for medical students, contributing to their learning of different diseases and symptoms.

"Alex is not only a boy who left us well before his time, but a person who has developed medical knowledge and infrastructure, people and relationships which will carry on well into the far reaching future," Chris said.

"We are going to go out there and we are going to keep wearing the blue shirts to raise awareness - everyone needs to know what the blue lips are for, Pulmonary Hypertension," Vivienne said.

"To enter a photograph of your puckered up lips, go to the website www.puckerup4ph.com and register them, for the chance to have your lips as the symbol of the advertising campaign - to help raise awareness of this unheard of disease."