Heart of gold
In July 2014, Connie’s 21-year-old son, Andrew, was diagnosed with PAH. At the time, she had no idea what those three words meant.
Pulmonary Arterial Hypertension (PAH) is a type of high blood pressure that occurs in the right side of the heart and the arteries that supply blood to the lungs. PAH occurs when the pulmonary arteries thicken or grow rigid, making it harder for blood to flow through them, and that raises the blood pressure in your lungs.
Your heart has to work harder to pump blood through those arteries, and after a while the heart muscle weakens. When this happens, the body can’t get the oxygen it needs, causing the individual with PAH to grow tired more easily. Over time, everyday tasks such as walking, will be more difficult and eventually impossible.
“Words could not describe my grief as I discovered that PAH was a rare heart and lung disease. It had no cure. It was progressive and degenerative,” she says “If left untreated, Andrew had only two to three years to live. Even with treatment, he could only hope for eight. This is a prognosis worse than many forms of cancer.”
What followed was a nightmare. Learning that a heart and lung transplant was the only answer, Andrew began a journey of endless specialist appointments and tests, only to be told that a transplant was far too dangerous.
Connie adds: “This illness does not go away. It desperately needs a cure, and to find a cure we need funding.”
As a family, they were committed to Andrew’s cause. The Pulmonary Hypertension Fundraiser Committee was created and together they embarked on a variety of fundraising events. School sausage sizzles, staff morning teas, a ladies’ luncheon, soccer tournament sponsorship and of course, their huge gala evening.
The evening itself was attended by 465 guests, and featured a silent auction, a raffle, and attracted sponsorship and donations from a variety of businesses. Donate Life Victoria was promoted, and tables had registration forms for people to become organ donors.
Former AFL premiership player Brian Lake and Home and Away’s Dennis Coard were the evening’s Masters of Ceremonies, and the result was phenomenal, raising $43,000.
These funds will be used to support the work of Professor Trevor Williams – Head of Allergy, Immunology, and Respiratory Medicine at The Alfred. Funds will help to maintain clinical support for those living with PAH and help continue his important research program.
Connie puts it best: “When all is said and done, I guess one of the greatest gratifications of the fundraiser was not only the friendship and bonds strengthened among the committee members, but the message that was relayed to Andrew."
“Andrew looks back at photos, and knows he’s loved. He knows, as a family, we did everything possible to help him”.