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SPRING 2026 InTouch | 9 MEET TAMA – THE BOY BEHIND THE BIGGEST SMILE to make those around him laugh. When a nurse is inserting an IV, he might flash his cheeky grin and tell them, “Make sure you get it in.” When an unfamiliar staff member is lifting him, Tama sometimes suddenly yells, “Yeowww!” The startled staff quickly realise that Tama is playing a trick on them. Despite everything he has endured, he holds tightly to his sense of humour. But perhaps the clearest example of Tama’s character came during a visit to Starship Hospital for a treatment that was expected to be particularly hard on him. Before the treatment, Tama was told he could choose something special to do. He could have gone to the movies or chosen another activity just for himself. Instead, Tama asked whether they could make burgers and give them to people experiencing homelessness. The family went to the supermarket, bought the ingredients and made 50 burgers. Ronald McDonald House helped with boxes and baskets, and every burger was carefully wrapped and handed out with a bottle of water. Tama stayed in the car while his cousin handed out the food, calling through the window, “Have a good night!” Lisa remembers how happy Tama was. “He was happy because they all got to eat that night.” Even before facing a difficult treatment of his own, Tama was thinking about how he could make someone else’s day a little easier. Support when it was needed most Lisa first connected with the Muscular Dystrophy Association of New Zealand through another parent in the SMA Facebook community. Since then, MDANZ has become much more than an organisation to Tama and his family. “They have become family,” Lisa says. “The kids and I love that. I feel comfortable knowing I can pick up the phone whenever we need support.” That support was particularly important when Cyclone Gabrielle left the family stuck at home without power. MDANZ helped with food and phone credit and provided emotional support during an extremely stressful and uncertain time. “It was huge for us,” Lisa says. “They have always gone above and beyond.” Donations to the Miles for Muscles Annual Appeal enable MDANZ to be there for individuals and families when they need practical help, trusted information, connection and someone who understands. The support is not only about responding during a crisis. It also gives families opportunities to meet others, socialise and feel less alone. Look beyond the equipment By sharing Tama’s story, Lisa hopes people will better understand children living with neuromuscular conditions. “They are children,” she says. “Look past their equipment and beyond their physical limitations.” People sometimes stare at Tama rather than approaching him. Lisa encourages people to come over, say hello and respectfully ask whether it is okay to ask questions. “Don’t judge and don’t just stare. There is something special about people living with limitations. They often notice so much more than the rest of us do.” Above all else, Lisa hopes Tama’s future will be filled with happiness and greater inclusion. “Happiness—just happiness,” she says. “And a lot more inclusion.” By supporting the Miles for Muscles 2026 Annual Appeal, you can help ensure children like Tama and their families never have to face their challenges alone. Your donation can provide connection, advocacy, practical assistance and a trusted source of support to New Zealanders living with neuromuscular conditions. “It would mean so much to children like Tama and to our family,” Lisa says. Please move your muscles for Tama and help support Kiwi families living with neuromuscular conditions. Muscular Dystrophy Association