PHOTOS: EMMA FAIRE PHOTOGRAPHY
When you first meet Pounamu and Kauri Hills there are two things that instantly stand out.
The young brothers have an amazing bond, and an incredible love of life.
Pounamu, 6, is fiercely independent, outgoing, bright and bubbly. He loves school and is impressing teachers with his progress.
Kauri, 4, is a shy, happy kid who loves the outdoors.
The brothers have had more than their fair share of doctors’ visits and surgeries in their short lives.
They both have Stickler Syndrome – a group of hereditary connective tissue disorders – which was picked up while mum Larnell Kati was pregnant.
The symptoms vary from person to person. For Pounamu and Kauri the syndrome presents itself by way of bone deformities, vision loss, hearing loss and cleft palates. They both needed help with breathing when they were born.
In the coming years the boys are likely to develop arthritis at a young age, their eyesight could get worse and retinal detachment is possible.
Kauri also has scoliosis – a sideways curvature of the spine.
Larnell says the boys have had more surgeries than she can count – “way too may” – for cataracts, grommets, cochlear implants and cleft palates.
Kauri has also had surgeries for his scoliosis and at the end of 2018 they both had hip surgery.
Pounamu and Kauri live with their mum and step dad Patrick Atutahi in Putaruru. Larnell says the boys don’t let their conditions hold them back.
“It’s a normal everyday thing for them. They don’t let it stop them.”
Larnell says communication is the greatest struggle for the boys. “That’s the hardest part.”
PHOTOS: EMMA FAIRE PHOTOGRAPHY
Pounamu and Kauri initially had hearing aids, but were referred to The Hearing House because they were no longer getting enough access to sound.
On June 18 they both underwent surgery for cochlear implants, which were switched on the next day. Pounamu has bilateral implants and Kauri has one on his right ear.
“We knew it was going to be life-changing,” Larnell says.
“Since then they’ve changed in a good way. It’s made a huge difference – their attitudes, behaviours, communicating with others. They are just so much brighter.
“We’re more than happy – it’s been amazing.”
Larnell says Pounamu has been making great progress at school with the teachers particularly impressed with his reading level, considering his hearing loss.
Pounamu catches the bus to school by himself and catches it home, or to his nana’s, in the afternoons.
Larnell says the boys particularly enjoy talking to their dad David about their cochlear implants.
“They loved sharing their experiences with their dad and his family. Pounamu shows his dad how to change the batteries and which one goes on which ear.”
Larnell says The Hearing House is “the best”.
“I’ve found them really supportive towards us, really helpful…..everyone. We feel really welcome and the boys feel at home there.”
PHOTOS: EMMA FAIRE PHOTOGRAPHY
