Never Give Up

Six years ago, after experiencing ongoing muscle weakness, he was given a life-changing diagnosis - Limb Girdle Muscular Dystrophy 2i (LGMD2i). Basically, Matt’s body doesn’t produce the chemical substance, Ribitol which is crucial for muscle function. He was told there is no treatment or cure, that he would be wheelchair bound in five to ten years and require oxygen, with the likelihood of an early death.

But Matt would not accept that fate. Instead, he took up the fight – not just for himself, but for the thousands of others around the world who are impacted by these relatively “unknown” nerve diseases, such as Motor Neurone Disease and Muscular Dystrophy.

“I was really concerned about the path ahead,” reflected Matt.

“My life was going to be very different to what we had planned – would I be in a wheelchair? Need full-time care? Would I live long enough to see my kids finish school?

“I realised I had to be stronger than ever to push through this, not complain about it and be the rock of the family.”

After consultations with numerous medical specialists Australia-wide, Matt was eventually led to his own backyard, Brisbane to see Associate Professor Robert Henderson MBBS (Hons), PhD, FRACP, a TGS Old Boy (1981-85).

A graduate of the University of Queensland, Dr Henderson undertook his neurology traineeship at the Royal Brisbane Women’s Hospital. After attaining his fellowship in Neurology from the Royal Australian College of Physicians, he continued his studies at the Robart’s Research Institute in Canada and the Mayo Clinic in Minnesota, USA, becoming a Senior Neurophysiology Fellow. He is a member of the Australian Medical Association, the Australian and New Zealand Association of Neurologists, and Co-Director of the RBWH Motor Neurone Disease Multi-Disciplinary Clinic.

Dr Henderson’s passion is clinical neuromuscular research and he was the driving force behind the establishment of Nerve Connection Foundation in 2021. He is regarded as one of the best Neurologists in Australia, if not the world.

As Matt was driving to his first appointment with Dr Henderson, he was listening to a podcast about a clinical trial on his disease in the USA that was showing positive results.

“This news gave me so much hope,” Matt stated.

“But the likelihood of the clinical trial coming to Australia was extremely low because of a lack of participants here.”

Matt refused to give up. With the help of another sufferer, he organised a Facebook group called LGMD2i Australia and eventually had forty Australians willing to participate in a trial here. He emailed the drug company and the advocacy group – cureLGMD2i and waited…

“I was in Warwick on the phone to Dr Henderson in January last year when he told me there was a very strong chance that there would be a trial in Australia,” said Matt proudly.

Over the next few months, Matt was eventually asked to be involved in the pre-trial to ensure his body could cope for the clinical trial.

“On reflection, over the previous few years, my body had continued to deteriorate. I was struggling to walk, I was continually falling over and I was in so much pain when I walked”.

Then, last year he was at the Toowoomba Royal Show with his son when he got the news he’d been waiting for.

“I got the most amazing phone call to say that I was accepted into the Australian trial with Dr Henderson’s team in Brisbane. This was truly one of the best feelings of my life.”

Matt is proud to be the first person in Australia to participate in the clinical trial with the drug that repairs muscle cells and almost instantly he felt an improvement. At his three-month checkup he met Wendy Blucher, who was taking photos of Matt’s muscle biopsy to use on her website, the Nerve Connection Foundation (NCF).

NCF raises funds for critical research and clinical trials into devastating nerve and muscle diseases for which there are no cures. Motor Neurone Disease and Muscular Dystrophy form only part of many similarly devastating diseases known collectively as the “Orphan Diseases.”

“It was an amazing feeling to discover that there are all these people rallying behind you, who you never even know are there. I thought I was fighting this terrible disease on my own, but they had my back the whole time,” Matt exclaimed.

It will come as no surprise that Matt was appointed Ambassador of the Nerve Connection Foundation last year and along with managing his condition, the family farm, full-time work with the National Australia Bank (NAB) and parenting, he has been tirelessly promoting the NCF.

“Twelve months ago I was just hoping the trial would work, fast forward to now and I’m spreading the word, meeting amazing people and raising awareness. My life has made a complete turnaround."

“Five years ago, the outlook was grim; I didn’t know what my life would look like. Although today, there are some challenges for me, I virtually have a normal life now. We can continue working the family farm, I’m still working hard with my career and I am so proud to be able to give our children a great education with Harry in Year 7 at TGS and Sophie in Year 4 at Toowoomba Anglican School."

“These privileges would not have been possible if the NCF didn’t fund this trial.”

NCF does not receive government funding, it operates purely from fundraising and Matt is determined to give back. His key message is Never Give Up – and he is the perfect example.

Matt wants to keep fighting to make sure that there is, in the short-term - hope and eventually - a cure for sufferers of these “Orphan Diseases.”

“Every day that I wake up, I can’t thank my lucky stars enough,” stated Matt.

“That’s what keeps me going – maybe there is a cure.”

Next month we invite you to join us for the Rising & Leading in Medical Research Lunch, presented by TGS Old Boy (1981-85) Dr Robert Henderson and supporting the Nerve Connection Foundation.