My brave decision - how my weakness made me stronger

There are many people in this world who would love to give back to their communities through their profession, whether that’s being a police officer, a teacher, or having a role within a charity to name a few.

Working at OCG Careers in a part-time capacity, I’ve been lucky enough to continue my chosen career, while being a part of an incredible cause that is close to my heart; a cause that affects me personally.

It may come as a surprise to many to learn that I suffer from spinal muscular atrophy (SMA), a devastating, and for some, terminal neuromuscular disease. SMA causes my body to lack the protein it needs for muscle growth and strength.

Within the past three years, countries like the USA (through bodies like the FDA) have approved the first-ever treatment for SMA, called Spinraza, a treatment that literally has the potential to be a life-saver and in adults like me, it can stop deterioration.

Submissions to the Pharmaceutical Management Agency (Pharmac) for funding have been deferred so lobbying continues with increased urgency, to ensure that New Zealanders can have access to this vital medicine.

Background to spinal muscular atrophy (SMA)

Google SMA and you’ll find some scary stuff. It’s a condition with varying severity, caused by a mutation in the SMN1 gene. Basically, the entire gene is missing.

Motor neurons are the essential nerve cells in the spinal cord that send out messages to muscles throughout the body. Because my body doesn’t make the protein it needs for the motor neurons to survive, it stops being able to communicate with the muscles, causing them to atrophy and stop working and, in the most severe cases, it impacts the breathing muscles.

I don’t want to scare people; I’m doing incredibly well and am still active at the gym, get involved in day-to-day activities and I generally don’t let it stop me doing anything, but I’m a rarity. One of the things that confuses people when I’m advocating for SMA is that when they see me, they don’t really see the full impact of the disease, and may be lulled into thinking it’s not as serious as I’d have them believe. Most people with my type of SMA (and at my age) would be in a wheelchair and I am not even close to that! Researchers are currently analyzing my DNA for genetic markers to try and work out why I am protected from the typical course of the disease.

Friends I’ve made through this journey have suffered heartache that is indescribable, from losing children to this disease to seeing loved ones lose all ability to communicate. The mental health issues alone that go with dealing with loved ones battling this disease are immense.

The more I’ve become involved with this cause, the more I realise that I need to be transparent and open up more. I was diagnosed seven years ago, and although the condition has a minimal impact on my life today, there are so many people fighting for their lives.

I know I am one of the lucky ones so I have chosen to be a voice to enable those more severely impacted to spend more of their precious time with those who need it most. They shouldn’t be having to campaign for something they should have access to although they still do. Our community is well worth fighting for and despite treatment being available, it is extremely costly.

Unfortunately, the reality is that there are so many people that will die if they don’t get treatment. Every day, could be another motor neuron lost, which is potentially another motor function gone - we cannot wait for this treatment. Young babies with SMA cannot fight a common cold and their bodies let them down.

I have met so many families impacted by it and having been to the Cure SMA Conference in America recently, I have seen for myself what a strong community can achieve and ultimately, what treatment means – it’s life-changing for both adults and children.

Adding ‘social consciousness’ to your career

After a discussion with the Chandler Macleod and OCG General Manager, Greg McAllister, I made a conscious decision to reduce my hours and responsibilities to act as an advocate for SMA treatment in NZ by joining a panel within MDANZ.

My career path has also taken a move recently, moving from Chandler Macleod into the OCG side of the business where I see myself involved mostly in the Career Transition (outplacement) side of things. This is equally rewarding and so in line with what I am doing outside of my official position. I am now working with people who may be more vulnerable due to significant change and my experience from a personal perspective means I am well equipped to offer support and guidance through a commercial and compassionate lens.

I am fortunate enough to have had the support of my employer each step of the way. I wanted to have the balance of working for me and my family, having a sense of purpose and the balance in my life where I can enjoy my kids.

People often feel that to be true to themselves, they should be doing X, Y or Z. I get it; having a social conscience while cultivating a meaningful career can seem at odds with one another.

Not everyone can be in the position to work for a charity; however, you don’t have to give everything up to have a social conscience. You can still be driven by your career, while pursuing something that is close to your heart like I have.

Before you look at taking a step like this, there are a few things to think about:

Are you working for an employer that supports you and understands what you’re contributing to? It’s critical that you’re working for the right company whose values and ethos are aligned with yours. I was so humbled by how supportive my GM was when I told him about my position – and was equally blown away by the support I received from my COO in Australia.

My part-time nature undoubtedly has added and will continue to add extra pressure on the business but they have been supportive of my personal decisions.

The cause needs to be 100% meaningful.

Final thoughts

As a leader, I didn’t want to show weakness. Partly because that is who I am and also because it should be the other way around – people are meant to be coming to me with their issues.

Now coming full circle, I recognise that showing vulnerability is actually a strength, but don’t be fooled, I am fiercely competitive and have a very strong back bone.

My voice can now be used to help those who shouldn’t be fighting. I have met some friends on this journey who need to be spending time supporting their children, some of whom may not live to see their fourth birthday if they go without this treatment.

I have never been one to shy away from a challenge and this is my moment to get into the ring and fight for what is needed. So, look out Pharmac and those in Government (both local and national), you’ll keep hearing from me until this is approved.

I have SMA and even though it means I have a condition I did not want, I now see that this makes me part of an amazing community that feels like family.

I am among the strongest internationally and am fortunate enough to have some of the leading international researchers wanting to study me in order to figure out why I am how I am (it’s life- fulfilling having demand for my DNA sequencing).

I have always been unique and it is no different when it comes to this condition; I just feel like I have a strong sense of purpose now.

If you want to know more about our fight for SMA funding, you can do so here.

If you are in Wellington on 1 May, and would like to support our cause, please join us as Paula Bennett, Deputy Leader of the National Party (and ex-recruiter) presents our petition with over 15,000 signatures to Parliament. Help me have a bigger voice on this life-threatening issue.

This story originally appeared on the Chandler Macleod website and has been updated and re-printed with their permission.