When the documentary ‘Noel in Focus’ was filmed in 2014, it followed my life as a 14-15 year old. I’m now 23. At that time. I was very much in my shell and not comfortable with my disability, as you can probably tell if you have seen it. I didn’t want to be seen as disabled, and wanted nothing to do with any of the medical side of my life. After the documentary was released to the public, I got a huge amount of attention that I wasn’t ready for, especially at that age. I had people in their 30s reaching out to me for advice, and I had no clue what to tell them because I was just as clueless.
I ended up retreating from all of the attention because I was starting to deteriorate at a rapid pace and could no longer do a lot of the stuff I could do before. I guess I can say I had a lot going on in that period of time as a teen and I didn’t have the mental stability or capability to keep up with the attention and positive - and not so positive aftermath.
In 2016, treatment (Spinraza) became available here in the US, and we were hoping by the beginning of 2017 NZ would approve the treatment - especially since it was showing results that it was actually working. During this time period I was sleeping at least 16-18 hours a day, I didn’t have the strength to continue photography or even shower myself anymore, and doing simple tasks like brushing my teeth would absolutely exhaust me. I was in a state of constant grief because of the amount of independence and mobility I was losing on a daily basis.
By the end of 2017 there was still no news about NZ approving Spinraza anytime soon. I was starting to lose hope and fell into a deep depression, I guess I just gave up by that point. Knowing there was a treatment out there that was working and improving thousands of SMA patients' lives and NZ wants nothing to do with it. That sent me into a downward spiral of believing my life wasn’t valuable enough to be helped.
2018 was probably the most miserable year of my life. I was extremely suicidal, I wasn’t getting out of bed, I was putting myself in risky situations because I simply did not care about my life and around that time I was receiving therapy twice a week because I was deemed a threat to myself.
My family were literally watching me die in front of their eyes.
So in December of 2018 my parents decided that we should take a Spinraza research trip to the US to see if it was a possibility for us to move there for me to start treatment - since I have a dual citizenship (dad is Māori, mum is American)
All the Doctors we spoke to were stunned that Pharmac continued to deny this treatment in NZ. It was clearly proven to work and by that point it’s been out for a couple of years so there was a huge amount of evidence and research that this can save SMA patients lives. Pharmac’s excuse was there weren't enough cases in NZ to fund this treatment, so us people with rare diseases can just expect to die because the healthcare system deemed us as non important.
The beginning of 2019 and still no treatment. At that point my parents decided to take a huge leap of faith and sell absolutely everything we had including our house and their business, and move to California. We arrived here in March of 2019 with one suitcase each and a dog named Nala. Everything we had left was in our suitcases.
I started treatment immediately, I was actually so surprised how fast everything happened. I was admitted to surgery after a few months of living in the US to put in a Suboccipital port at the back of my neck to receive intrathecal injections of Spinraza. Luckily this all happened before Covid hit really bad here. By the end 2019 I was already starting to improve physically, it was like the deterioration halted and tiny losses, like the ability to brush my own hair, started to come back. I felt my quality of life return and with that came a clearer mind and a huge sense of hope. I’ve learned to embrace every part of myself including my disability, like for the first time in my life I was at peace with who I was. If you’ve never watched ‘Crip Camp: A Disability Revolution’ on Netflix, I 100% recommend everyone to watch it. Because with treatment and this documentary I have transformed completely, I’ve never been so accepting of myself. Like instead of thinking my disability isn’t who I am or a burden, it’s become something I’m so proud of and I genuinely wouldn’t have it any other way.
Getting the chance to receive this treatment when so many SMA families watch their loved ones deteriorate and die in front of them makes me sick to my stomach. Imagine how helpless these families must feel knowing there are so many treatments available now that could save so many lives but they can’t do anything about it because NZ won’t fund it. I mean I don’t even know when I’ll be able to come home because of this reason..
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