Band to­gether for Tama

South Waikato News - - FRONT PAGE - By ROBERT STEVEN

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,

and laugh­ing.’’

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.

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