Friends We’ve Lost

Helen was fierce campaigner for Pompe disease and the right for all patients to have access to treatment. Not only did she start the Australian Pompe Association alongside Bet, Bob and Gloria, she also sat on the board of the International Pompe Association (IPA), which required her to be online, and on the phone at all hours of night. Helen viewed this work as important as she understood the need to band together and fight for Pompe patients on a global scale. Helen’s commitment and tenacity was recognised in 2007 when Helen received an Order of Australia Medal (OAM) for her hard work and dedication to the Pompe community.

Even though Helen was a strong woman who many know for her strength of character and robust opinions, those who met her and talked to her often also know she had a soft side. A side that was welcoming and supportive to those in need. New patients were welcomed with open arms, and if you were lucky enough to meet her in person, her world famous sponge cake! Helen was available to talk whenever others needed and was a warm, caring and knowledgeable friend to lean on in times that were often distressing for patients.

Sadly Helen never got to see the outcome of all of her tireless efforts as sadly she passed three years before treatment was made available to all Australians, however we knew wherever she was, she would have been celebrating with us. Helen’s brother Bruce, is also still a great supporter of the Australian Pompe Association, and we can only imagine the pride he must have felt as he finally saw all of his sisters hard work pay off on that day in 2015.

Helen may be gone, but she will never be forgotten, as her legacy lives on through the work of the Australian Pompe Association.

Another testament to Bet’s determination was, as the first adult patient to start treatment under Genzyme’s International Compassionate Access Program (ICAP), her and her husband Keith faced the challenges of travelling every fortnight from Newcastle to Sydney without complaint.

Bet supported many new patients, and was a compassionate listener and friend to many, as she ensured they were welcomed into to Australian Pompe community with open arms. The Pompe community will always remember Bet, as a caring and determined woman, who helped develop Australia’s first support network for all Australian Pompe patients.

A testament to this was that Bob put his life on hold in order to be the only Australian patient to enrol in the Myozyme trial in the United States. A trial that ran for over nine months. During his time in the United States Bob met many other Pompe patients, all who remember him as a kind man who was passionate about sharing ideas and knowledge.

Bob was also lucky enough to have the support of his

Bob also shared a close bond with Helen and the two often talked and shared ideas about how they could continue to fight for access to treatment for all Australians. We know that treatment would never have gotten passed in Australia if it wasn’t for the hard work that Bob contributed to in the early days for the Association. For this Bob will never be forgotten and all Australian Pompe patients will be eternally grateful.

Cynthia showed to all a great determination not to let her Pompe disease dictate her life and stanchly maintained her independence.

Doug was a member on the executive committee from 2011 and his invaluable input during this time, which included him doing radio interviews, attending speaking events and visiting Canberra, meant that Doug got to celebrate with us in July 2015 when treatment was finally granted.

He enjoyed spending time watching bike racing, playing with friends at childcare and watching shows like Bob the Builder. Above all Nate loved people and had many special relationships in his hometown of Maryborough.

Nate was so fortunate have a family who loved him fiercely. His parents Jenna and Shaun, his grandparents Neil and Janine and his Aunty Maddy were huge advocates for Nate and they spent every day of Nate’s life loving him and fighting for him to have the normal life of a little boy.

Nate and his family have also been big advocates for the APA and we know that our relationship with them will continue into the future, as will the memories of Nate that we will always hold in our hearts.

Fly high our little Pompe Warrior xx

Pompe disease is about coping, and it was evident in the time that we all shared with Nicole, that coping was something she did so well. It was also evident that Nicole did not let Pompe define her. As she shared with us stories of her family, friends and animals she loved, it reminded us that she was a child first, not a Pompe patient. She was a child who brought a spark to her world and to everyone she touched with her quick wit and easy manner.

To Nicole’s parents, Geoff and Annette, you will always have a place in the hearts of the members of the Australian Pompe Association. We consider you part of our family and are inspired by the strength, courage, determination and fight you gave for your beautiful Nicole on a daily basis.

Rest easy little girl, you will be remembered always.