Counting blessings

Helen Walker OAM lived a life of extraordinary achievement, despite facing many health challenges.

At age 18, Helen contracted rheumatic fever. Moving to Swan Hill for health reasons, she nevertheless found the energy to support her local community.

Her many years of extensive volunteer work and service saw her named Swan Hill’s Citizen of the Year.

When she turned 49, Helen started experiencing difficulties in walking. She was diagnosed with Pompe disease, a rare and fatal metabolic disorder that damages nerve and muscle cells.

At that time the disease was barely known, even by medical professionals who told Helen there were no treatments available and no cure.

By chance, Helen saw Professor John Hopwood AM talking on television about his work in glycogen storage disorders and reached out to him. A friendship was born and Professor Hopwood – who would later become a SAHMRI researcher and Board Member – contacted international colleagues to learn more about potential treatments for the brutal condition.

Professor Hopwood also contacted three other Pompe patients in Australia and helped establish the Australian Pompe Association (APA), with Helen as President.

In recognition of her community work and for those living with Pompe disease, Helen was awarded an Order of Australia Medal in 2007.

“I try to count my blessings and not my burdens, but some days are easier than others,” said Helen.

“Every day that I press on and persevere is my way of saying ‘blast you’ to the disease.”

Sadly, Helen never got to see the outcome of her efforts as she died in 2012, three years before Pompe treatment was available in Australia.

Helen left a gift in her Will to SAHMRI to support research into lysosomal storage disorders like Pompe disease. It was the first legacy gift SAHMRI had received.

Helen’s message was to never give up and to fight on relentlessly.

She greatly believed in the importance of medical research and this spirit lives on at SAHMRI, and through the work of the Australian Pompe Association.

If you'd like to learn more about leaving a gift in your will please contact michelle.ward@sahmri.com.