Whetu suffers from a rare gene mutation and Global Development Delay, which present a range of challenges for the loveable two-year-old. One of those is being physically unable to get into bed by himself. Hearing about Whetu’s plight, Satan’s Little Helper quickly stepped in to provide a solution.
Two-year-old Whetu has hyperthyroidism. Most people with this condition can treat it with medication and live largely unbothered by it. Sadly, that’s not the case for Whetu. His hyperthyroidism is caused by a rare PAX8 gene mutation, explains his mum, Kelsi.
“It took specialists three years to figure it out. His mutation affects how his kidneys work, which means his medication isn’t absorbed properly. Even though Whetu takes daily medication, he doesn’t get the full benefits.”
Multiple challenges
Whetu has also been diagnosed with Global Development Delay (an umbrella term used to describe children who are significantly delayed in two or more areas of development).
“Even though he’s almost three, his development level is that of a one-year-old,” says Kelsi.
He’s also non-verbal, displays traits associated with those on the autism spectrum, and lacks the fine motor skills to do things like feed himself with a spoon or drink from a cup.
“Whetu communicates in ‘baby babble’ and we’re not sure if he’ll ever be able to communicate verbally – so, as a family, we’ve decided to learn New Zealand Sign Language, so we’ve always got something to fall back on if that happens.”
No more heavy lifting
Whetu’s condition also means he lacks the coordination and strength to get into bed by himself. “He’s 25kg and I was struggling to put him to bed without help,” says Kelsi.
Satan’s Little Helper doesn’t take this sort of news lying down, so quickly stepped in with a solution.
A floor bed was soon on its way to the stricken family – and Kelsi says it’s been a revelation.
Sleeping easy
“He absolutely loves his bed and he’s thriving because of it. Where previously he’d get overtired, now he’ll come home from daycare, hop into bed and pile his favourite teddies on top of him for a nap or a chill out.
“Because his bed is on the floor, he can jump around on it and have fun without falling off.”
As Whetu’s immune system is weaker than his peers, having an easy way for Kelsi to comfort her son is important, too.
“The floor bed gives me access to him when he’s sick. I can easily get in next to him and give him a cuddle, which is so important.”
Another positive change has been in his interaction with other kids.
“He’s come out of his shell a lot,” says Kelsi. “He used to want nothing to do with other kids at all but he’s a lot more comfortable around them now and gets super happy when I ask him if he wants to hang out with his friends!”
With more play and a great place to rest afterwards, Whetu is now in a much happier place.
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