Zoey can’t play like other kids her age – and that gets her down. To help turn her dreams into reality, Satan’s Little Helper sent her something awesome that doesn’t require any physical effort.
Four-year-old Zoey has been struggling with her health since the day she was born with tremors and breathing problems. Her development was always behind other children and, despite an early diagnosis of spinal muscular atrophy (SMA) type 3, her mum Chauntel said she was shocked at how quickly Zoey’s health worsened.
“After the first lockdown ended, she wasn’t running or jumping properly and was a bit unstable on her feet. In the 12 months that followed, she was falling down multiple times a day, couldn’t stand up unsupported, and was incredibly weak.”
While medication existed – a drug called Nusinersen, also known as Spinraza – it wasn’t accessible in New Zealand at the point of Zoey’s diagnosis.
“It took 12 months of begging the government and Pharmac to provide access to the treatment,” explains Chauntel.
Complex procedure
Zoey has now been on the drug for a full year. Because it is administered every four months via a lumbar puncture, she has to go under general anaesthetic every time – but it has been worth it.
“We’ve noticed a huge improvement,” says her mum. “Zoey is more stable on her feet, she is a lot more confident, and she has regained some of her independence. However, she still gets tired quickly and is frustrated when she can’t do as much as her friends.”
As encouraging as Zoey’s improvement is, SMA is unpredictable. Zoey still experiences weakness in her limbs when moving over distances and is about to get her first wheelchair.
“Our main goal is to stop any further decline. Doctors hope that her current treatment will do that. Plus, we have hydrotherapy and physio to keep her as active as possible,” adds Chauntel.
Barbie dreams = Barbie reality
Satan’s Little Helper wanted to do something to put a massive smile on her face and give her something to do with her friends. So, a Barbie Dreamhouse was sent her way!
“She couldn’t believe it was for her when she first saw it,” says Chauntel. “She keeps asking to play with it and I’ve had to tell her a few times it’s hers and it’s here to stay!
“She’s absolutely loving it and it really distracts her when she’s more tired. The great thing about it is she can play sitting or standing and it gives her something to do, especially now we’re heading into winter when she normally gets sick more often.
“It’s also a great way for her to interact with her friends. Her and a mate spent a good two hours roleplaying and having fun – which also makes me feel so much joy and excitement when I get to see her happy and having fun!”
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