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Sophie Davison lives in New Plymouth. She is 6 years old and like many children her age she is lively, happy and full of personality. She adores her sister, Emily, 9 and, like younger siblings the world over, wants to be just like her big sister.
Nicki Trass, Emily and Sophie's mum, says one of Sophie's biggest wishes is to go to dance class just like her sister does.
"It's not something she can do though."
Emily can happily twirl in a tutu, Sophie can't. Sophie is one of 35 children in New Zealand living with spinal muscular atrophy (SMA).
Sophie can't walk freely on her own, nor can she dress herself, shower or toilet herself or do many of the things her sister and her friends take for granted.
SMA is a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement. It is a degenerative genetic condition which, if untreated, generally makes sufferers weaker over time, before causing an early death.
There is no cure and in New Zealand, nor is there a publicly funded treatment.
Spinraza, also called Nusinersen, is the only FDA-approved treatment for SMA sufferers. It isn't a cure but has been proven to slow or stop the effects of the disease. It is funded and publicly available in more than 50 countries worldwide.
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Advertise with NZME.New Zealand isn't one of them.
The annual estimated cost for all 35 children in New Zealand with SMA to receive the treatment is $6 million, according to advocacy group Patient Voice Aotearoa.
Pharmac, New Zealand's drug-buying agency, has assessed the drug and given it a high priority rating. However, Pharmac does not have the budget to fund all the drugs on the priority list. Not only has Spinraza not received funding, there isn't even a clear timeframe as to when it might.
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Fiona Tolich, a trustee of Patient Voice Aotearoa and who has SMA herself, says it's time the Government funded the drug.
"At a time when the Government is giving out cash for just about everything, imagine being the parents of these children and realising that the Government sees no value in treating them. This Government has given $72.5 million to the racing industry, $66.3 million to Fletchers, and $15.4 million to Sky City. This is a matter of the New Zealand Government prioritising the lives of our kids. Where is the kindness?"
Every week that goes by, Sophie and the other 34 children living with SMA in the country, risk losing another motor neuron. As each motor neuron is lost, so is their body's ability to do the things the rest of us take for granted. Those motor neurons are responsible for many things we do, from sitting or standing, to swallowing or even breathing.
How the hell is this happening in New Zealand? Who lets kids suffer like this? How can the Health Minister sleep at night, knowing he is allowing this to happen?
For Sophie and children like her, winter coughs and colds are a real threat.
"Covid-19 was frightening for all our family. Respiratory infections are a real risk for people living with SMA."
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Advertise with NZME.Trass says she and her partner Tristan Davison have been working from home during Covid-19, and didn't send Sophie back to school as soon as level 2 came into place.
"She was really frustrated that she couldn't go back yet, but we needed to give it at least another week, to be sure she would be safe."
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When Sophie was born, her parents didn't know she had SMA.
"She was actually really advanced for her age it seemed. She hit all her milestones early, rolling over, crawling. I thought she would be really early to walk."
Instead, Sophie has never walked. Soon after Trass and Davison noticed Sophie regressing in some of her development she was diagnosed with SMA.
"She went from crawling comfortably to sort of dragging her body. It was clear something was wrong. Before Sophie, we had never heard of SMA."
Now, Sophie's family know plenty about SMA. It affects their life every day. Sophie struggles with eating as one of the medications she takes reduces her appetite. She needs a full-time teacher aide at school and, as she gets older, she gets even more frustrated when she finds herself on the sidelines watching her friends run off to the playground.
Sophie still has good upper body strength compared to many children with SMA, but having Spinraza available in New Zealand would be good, says Trass.
"Just to know we had the option to access it if Sophie needed it, it would help take away some of the worry about the future."
Spinraza treatment should be available to Sophie and the 34 other children living in New Zealand with SMA, says Tolich.
She wants Spinraza funded for children like Sophie sooner than later, and says she can't comprehend the decision making that puts money into horse racing and other businesses over health.
"How the hell is this happening in New Zealand? Who lets kids suffer like this? How can the Health Minister sleep at night, knowing he is allowing this to happen?"