Band together for Tama
TAMA Trueman cannot shake your hand or speak a word of gratitude, but the dream is that someday he might be able to.
The 3-year-old from Mangakino was born suffering hypotonic problems – a condition which means he has little control over his muscles.
For Tama, who was born in Tokoroa Hospital, a lack of control over his diaphragm muscles means he struggles to breathe.
While most young toddlers are shouting and laughing at 3, Tama cannot speak and the weakness of his core muscles means he must make a serious effort to sit up straight.
It has been a long journey for his parents Kirsty and John.
However, fundraising from a family day to be held on Saturday could help young Tama travel to Los Angeles for special therapy.
‘‘We’ve got five bands playing at Ned’s Cafe- Bistro in Whaka- maru,’’ Kirsty Trueman said.
‘‘There will be a bouncy castle, a waterslide, an on-site hangi, pony rides and raffles for things like signed sports gear.’’
She said the bands, some of which are from Tokoroa, would be free for the public, rides would have a small charge for all-day access, and a koha bucket would circulate.
Trueman said she hoped local generosity would help towards the $8500 cost of specialist treatment at the Napa Centre in Los Angeles.
At the centre, a three- week ‘‘ intensive neurosuit therapy’’ programme would stimulate Tama’s muscles, and attempt to help his muscles learn to walk, she said.
Technology and specialists in LA might also be able to diagnose the cause of Tama’s hypotonia, which doctors in New Zealand did not have the expertise or technology to do, she said.
Trueman – a councillor for MangakinoPouakani ward on the Taupo District Council – said the community support has been wonderful.
‘‘There has been overwhelming support so far, we’re humbled and we’re so thankful,’’ she said.
‘‘ We’re lucky we live in the community we do.’’
Tama’s control over his muscles seemed to be improving, Trueman said.
‘‘As a baby he couldn’t hold his head up or control his eyes, and he had trouble breathing.
‘‘His eyes would roll and he won’t be able to look at anyone.’’
Ongoing improvements in Tama’s ability to use his muscles showed hope.
‘‘ He started laughing at 9 months. It was wonderful to see him laughing because at that stage we weren’t sure if he could see.
‘‘Once he got the co-ordination, he began looking at everything,
His progress lit up his four siblings, aged 21, 11, 8 and 5 years old.
‘‘They were all trying their best to get him laughing, and responding.’’
Tama loved to be among other children at the Kiwi Steps preschool in Whakamaru, his mother said.
‘‘ He loves being around the vibrancy of so many kids running and playing.’’
The Trueman family have been taking Tama to therapy in Wellington over the last year. She said when she had council duties to attend, her mother Lin Phillips would take him. Tama has made some progress in Wellington, but would be expected to make more with the specialist treatment.
The family would cover the costs of flying Tama, his parents and his grandmother to the centre in March.