ART WITH HEART
Artist and graphic designer Martine Vanderspuy channels her many talents toward fundraising to help find a cure for a rare genetic disorder.
“I’d managed to stay on top of motherhood and my work as a graphic designer for magazines and advertising agencies,” she recalls. “But it was a completely different story with Tom. From the outset he couldn’t feed and he had to be fed through a nasal-gastric tube. Then it emerged that his stomach wasn’t processing food properly so it had to be bypassed, which meant feeding by tube directly into his bowel.”
For Martine and her husband, Alan Martin, and their entire family, it was the start of a nightmare that continues to the present day. It wasn’t until Tom was five that he was finally diagnosed with Mitochondrial disease, a debilitating and potentially fatal genetic disorder that robs the body’s cells of energy causing organ systems to become damaged and fail. There are currently few effective treatments and at this stage, no cure for the disease. In Tom’s case, it means that although, on a good day, he looks like a perfectly healthy boy, he has multiple medical issues. In his short life he has experienced 36 medical procedures requiring general anaesthesia, he has suffered bouts of cluster headaches that leave him writhing on the floor in agony, he has retinitis pigmentosa, a degenerative eye condition that causes night blindness, tunnel vision and eventual permanent loss of sight and at times his speech and motor skills are affected. Tom can’t go anywhere without his backpack, which contains the nutrients that tube-feed him day and night.
“When Tom was born Mito was considered an internet fallacy,” Martine explains. “That was one of the reasons why it took so long for him to get a diagnosis. Gradually the evidence built to the stage where it was actually recognised as a disease, though initially thought to be extremely rare. Finally we connected with neurogeneticist Professor Carolyn Sue, of the Kolling Institute for Medical Research at Sydney’s Royal North Shore Hospital and she confirmed the diagnosis medically. Now research shows that Mito is actually much more common than initially thought and current research shows that one in 200 Australians carry the genetic mutation that puts them at risk of developing the disease.”
Often called the cells’ powerhouses or generators, Mitochondria are the energy source in almost every body cell. They transform food to produce 90 per cent of the energy needed by the body to function and grow. Mitochondria are most plentiful in tissues that require a lot of energy to function and therefore the disease causes most damage to the cells of the brain, muscles, heart, liver, inner ear and eyes. Researchers now believe that Mito (as the disease is called) may also be a significant factor in a wide range of diseases including Parkinsons, Alzheimers, Huntington, motor neurone, cardiovascular, diabetes and even tumour metastasis.
With very little but the strength of their convictions that a cure must be found to help Tom’s plight, Martine and Martin set about rearranging their lives to go into battle on his behalf. “As Tom needs more constant care than other children, I pretty soon realised I needed to work from home,” Martine recalls. “So I sold my graphic design business and took on media work that allowed me to work my own hours. Martin is a geologist and has to spend a lot of time overseas, so it was important that I was as flexible as I could be to fill in the gaps. I also decided to devote as much of my spare time as possible to fundraising for the Kolling Institute and the Australian Mitochondrial Disease Foundation (AMDF).”
These days Martine designs a suite of food industry magazines as her main source of income. When Tom is well enough, he attends school for half the day and has a nanny/carer in the afternoons. As part of her intensive internet research into MiTO, Martine learned that LED light therapy had been successful in mitigating some Mito patients’ symptoms. Tom now has his own sun bed containing 2500 LED lights and with just 50 minutes a day on it, his vision impairment has shown significant improvement and other symptoms have been mitigated as well. As a result Martine’s fundraising efforts are now directed at funding a proper clinical trial into light therapy.
“In the past I held a big Christmas gift sale at our house to raise money for Mito research,” Martine explains. “But that was hugely time consuming so I needed to find a way to mix my fundraising with my day job. I’ve always been a keen photographer and I have a vast image library, so it wasn’t too much of a leap to decide to start an image gallery for bespoke artworks for the home.”
Discover more about Martine Vanderspy’s inspirational story in the November issue of Australian Country Magazine. Click here to purchase this issue!