Sep 12, 2022, 9:54 PM

Zoey was born a happy healthy baby. She reached all her milestones by the age of one and was thriving. Never did we dream that that could change so suddenly.

Fast track to the end of our last big lockdown; we noticed something was amiss when we saw her interacting with other toddlers her age and she was unable to keep up. She could not run or jump and she had a slight waddling gait in her walk. Which led us to our first doctor visit, then after xrays and still no abnormalities found, finally led us to the Neurologist. Who then referred her for an MRI and blood work.

A while later we recieved a phone call on the Monday asking Chris and I to come in on Wednesday for an appointment as they found something in her blood test that would have a big impact on her life and they wanted to do genetic testing.

I remember just breaking down. We had no idea what that meant for our baby girl - it was the longest, scariest 48 hours of our lives.

The appointment feels like a blur now. They told us she has Spinal Muscular Atrophy Type 3 and would be in a wheelchair for the rest of her life within early school years; we were just completely devasted.

Then they said there are three life-changing treatments available, one of which, Spinraza, is funded in 65 countries, but none of which are funded in New Zealand, that was just heartbreaking.

Since Zoey's diagnosis our whole lives have been turned upside down. We live in fear of what each day may bring and if she will ever get access to treatment.

We have already noticed a huge decline within her; she is struggling to stand up by herself, she has become more hesitant and has slowed down alot.

As a parent, it is just excruciating watching your child struggle and knowing there is an alternative out there but its not accessible and there's nothing you can do about it.

I spend most my days now advocating on Zoeys behalf trying to get her the best quality of life.

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