Hope

My HOPE for the future is for the government of New Zealand to fund the standard of care treatment for Pompe Disease that is available in nearly 80 other countries.

Allyson Lock

Age 55

New Zealand

Allyson Lock, MNZM

President

New Zealand Pompe Network

My hope to be heard.

When I first thought about contributing towards this, my hope was based around a time before our current Covid crisis. Right now we all have to have hope that everyone will do the right thing to help flatten the curve and stay indoors as much as possible and I hope that our vulnerable Pompe community stays safe.

But in New Zealand even before the Covid crisis Pompe patients were living their own personal crisis. We are one of the very few countries that do not fund Myozyme. 76 countries do fund this treatment and we live every day with the hope that our government will fund this life-saving drug that prolongs quality of life and gives us all hope for our future.

So my hope remains the same, that when we emerge from this crisis our government will look to help its most vulnerable groups of society. Not just Pompe patients but all rare disease patients who desperately need medications to be funded.  We cannot be left to feel like second class citizens, we need our government to recognise its failing in supporting rare disease groups. It will be a new beginning and an uncertain one but I hope that the New Zealand government will finally listen to the 300,000 voices who so desperately hope they will be heard.
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Samantha Lenik
Vice President
New Zealand Pompe Network
M: 00 64 211865091

Moving on with Pompe

Since my diagnosis in January 2014 I have had my ups and downs, times where I have felt so worried about my future but also moments where, because of my disease, I have realised how strong I can be. For me living with Pompe is about focusing on the present, concentrating on the things I can do and not getting frustrated with what I can no longer do. My legs are my weakest muscle and no matter how frustrating that can be I still go for walks, attend a gym, socialise with friends, attend Military functions where I am standing for 1-2 hours, (no mean feat when you’re legs feel like jelly), keep up with the kids, and clean a house. I am also an advocate for Pompe, especially in New Zealand where we are still fighting to get treatment. I have had the privilege of meeting other Pompe warriors along the way and it always amazes me at how strong everyone is. It is a mental journey as much as a physical one and being able to accept it and move on and enjoy the now is so important. Happy Pompe Day!

Samantha Lenik
Vice President, New Zealand Pompe Network