Tama Jai Trueman (centre) with his parents, Kirsty and John, and brother Kaani. Photo / Ben Fraser
Tama Jai Trueman (centre) with his parents, Kirsty and John, and brother Kaani. Photo / Ben Fraser
A Whakamaru family is turning to the community to get their 3-year-old the medical treatment he needs.
Tama Jai Trueman was born with hypotonia, a condition that reduces muscle tone, strength and control. Tama's family is raising funds to take him to the Napa Centre in Los Angeles to receive"neurosuit" therapy to help develop his muscle control because the therapy isn't available in New Zealand.
His mother Kirsty Trueman said Tama did not move around like their other children had.
"His eyes would just sort of roll. We wondered if he was blind but it was because he couldn't control his eye muscles. He was struggling to breathe so he was given oxygen and taken to Waikato Hospital. He remained on full-time oxygen at home for the first year of his life because he wasn't able to breathe deeply enough on his own."
Hypotonia is a symptom of an underlying disease or disorder that affects motor control in the brain, or the muscles directly. The problem is doctors often have difficulty identifying what that underlying problem is.
Mrs Trueman said Tama had been through many tests but there was still no real explanation. After intensive therapy, including weekly trips to Wellington, Tama is finally able to hold himself up when sitting but still isn't walking or talking.
"The doctors say the next two years are crucial as far as brain development goes. We need to try and get Tama as much movement as possible. By the age of five we'll have a good indication of what he'll be able to do. I'm waiting for the day he can take a step on his own without a walker ..."
The family first heard about the Napa Centre through a Tauranga family who'd taken their boy over for therapy. The centre is one of the few places in the world where you can get neurosuit therapy. The suit supports the body with rubber cords providing resistance, building muscle strength and encouraging proper movement, helping the brain learn how to control the body's movement.
The treatment will cost $8500 plus travel expenses, and even with the support of family and friends they still needed a hand to get the money together. So Mrs Trueman put together a Givealittle page.
As of yesterday, contributors had pledged $7195 of the $10,000 target. The family is also putting on a "Tamathon" fundraising event in Whakamaru on January 24, featuring live bands and family entertainment.
