DOCUMENT

8 | InTouch SPRING 2026 Above, left: Tama getting ready to hand out burgers with his cousins. Tama lives with spinal muscular atrophy, a neuromuscular condition that affects his muscles, movement and breathing. While his body may limit what he can physically do, Tama has the same interests, hopes and desire to be included as any other ten-year-old. As Lisa explains, he is simply “a ten-year-old boy stuck in his body”. A mother who knew something was wrong Lisa first noticed that something was different when Tama was around eight to ten months old. Although she was a first-time mum, she had spent much of her life around babies and children. She could see that Tama was not reaching the milestones she expected, and she made countless visits to the doctor looking for answers. “I knew something wasn’t right, but I felt like I wasn’t being heard,” Lisa says. Tama’s Cook Islands heritage was sometimes suggested as a reason for his delayed development. Lisa was told that some children simply reached milestones more slowly and that it might take Tama longer to hold up his head. At first, Tama was diagnosed with spina bifida. Lisa was reassured that he would be fine and might simply need medication or surgery. Further testing showed that this diagnosis was incorrect. MEET TAMA – THE BOY BEHIND THE BIGGEST SMILE When Tama was 15 months old, Lisa was told that he had spinal muscular atrophy. She was also told that Tama would never walk, was unlikely to reach his second birthday and that the family should concentrate on making memories. Lisa was crushed. At one of the most frightening and painful times of her life, she felt that her little boy was being seen as a patient number rather than as Tama. “He was being referred to as one of the terminal patients,” Lisa remembers. “It felt like he was an NHI number rather than my child.” But Tama has continued to defy the expectations placed upon him. Now ten years old, he has grown into a caring, funny and remarkably resilient young person. Holding it behind his smile Tama wants to take part in everything happening around him. That can make living with his condition incredibly difficult. “He wants to do so much, just like everyone else,” Lisa says. Tama uses a powerchair and has a specially adapted desk at school to support his arms and elbows. He is assisted by a teacher aide and needs a hoist in the bathroom. At home, the family has a wet-floor shower and an accessible van. As his breathing has become more difficult, Tama now also uses a BiPAP machine while sleeping. One of the hardest things for Tama is feeling as though he is always the person who needs extra help. “He takes it on the chin and does what he needs to do, but I can see howmuch it affects him,” Lisa says. “He holds it behind his smile.” Recently, Tama asked his mum to get him a baby walker and teach him how to walk again. At other times, his frustration becomes too much to hide. One day, Tama was crying because he hated being in his wheelchair. Lisa began crying too. Despite everything he was feeling, Tama stopped and began comforting his mum. “He is so resilient,” Lisa says. “He is the strongest person I have ever met.” Finding humour in difficult moments Hospitals, treatments and medical procedures have become a normal part of Tama’s life, but he still finds ways