Temiti faces an uncertain future but his mum Katie knows one thing for sure: it’ll be difficult to bank on government support for her boy. That’s why she turned to Satan’s Little Helper.
Born with multiple congenital health conditions, 2-year-old Temiti spent the first six months of his life in hospital split between Invercargill neonatal intensive care unit and Starship in Auckland.
“He’s had close to 200 follow-up appointments since then,” explains his mum Katie, “and he’s been to nearly every major hospital in the country, as we’ve been on trips to Christchurch and Dunedin for treatment as well.”
Temiti requires breathing and feeding support, has vision and hearing issues, severe hypotonia (decreased muscle tone) and is currently non-mobile. He also needs a wheelchair.
Lack of support
Despite an urgent need for support, Katie is struggling to find the level of care her boy needs.
“The government doesn’t seem to care about the parents of disabled children,” she says. “Finding support has been really difficult.”
Even getting a diagnosis for Temiti has been a struggle, despite extensive genetic testing of Katie, Temiti and his father Raphael. In a way, that’s a blessing in disguise.
“We received a false positive test result that indicated he might only have a life expectancy of ten years, so it was a huge relief to discover that diagnosis was incorrect. That made me think that I’d rather not know what he has, so I don’t treat him any differently as a result. We’ll just take each day as it comes and do the best we can for him.”
As well as his appointments, Temiti has had five surgeries. Katie says they’ve been relatively ‘minor’, such as two hernia operations and one to place a permanent feeding tube into his stomach. He’s also going under the knife on a semi-regular basis to try and correct his club feet.
“The club foot surgery is a long process and involves casting every week,” explains Katie. “They cut the Achilles tendon and then recast it in a new position to let the foot move back into its proper position. It’ll be a long process before it’s better!”
Unsurprisingly, Katie says “he’s a tough wee dude”.
Building blocks
Temiti loves anything to do with lights and movement, so Satan’s Little Helper hooked him up with an Ocean Projector that displays moving lights and images for him to follow with his eyes and hands.
“It’s great for him to have something to get his attention that’s not a screen. He can also follow the projections with his hands, which has helped his coordination.
“We’ve got a team of physios, occupational therapists and speech-language therapists, but having a way for Temiti to build the mind-muscle pathways at home is really important.”
Difficult conversations
It can be hard for the parents of children with disabilities to speak about their challenges and difficulties, especially when they’re so young, but Katie does so bravely.
“When you first get pregnant, you start thinking about your kid’s first steps, their first day at school; all those typical milestones, but none of that is certain for us,” says Katie. “You start thinking about what life will look like for your kid.
“It’s hard to be a parent of a child with disabilities and trying to find support is difficult, so it’s nice to know that some people care.
“It’s also comforting to know you’re not the only ones struggling. It’s not easy to find relatable parenting stories, so hopefully telling ours will help others.”
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