Hi, I am Samantha Lenik. I am a Mum to two gorgeous kids, a wife and a Fashion Blogger, and lastly I have Pompe.
My journey so far...
I was diagnosed in January 2014, but first a little bit about me. Back in 2007, after the birth of my son, I noticed that it seemed harder for me to get fit again. I used to love running and attending all the Les Mills classes, but I was finding it all very hard work. For years I put it down to not getting fit enough, not trying hard enough at the gym, not making enough time for exercise. But when I started falling over when running, stumbling, and experiencing shortness of breath that’s when I knew in myself it had to be more.
This went on for years, with me visiting physios and doctors and just complaining of lower back pain, gradually the running became harder and I started tripping up, the aerobics classes caused me to stumble and fall, and I was getting out of breath. Finally in January 2014, after months of numerous tests, my world was turned upside down. I was diagnosed with Pompe. While the diagnosis was devastating, I was also relieved that I knew what was going on, and in a weird way it opened my eyes to so many aspects of my life, and made me see the positives in what I have.
It made me appreciate my little family even more, made me stop and think about what is important, and how very lucky I am to have an amazing, supportive extended family and group of girlfriends who have played such a vital part in supporting me. It has also made me a fighter. What was even harder to hear than the diagnosis, was that there is a treatment available that can halt the progression, but that this treatment is not available in New Zealand. Pharmac will not fund it because they believe the clinical data is not strong enough. Yet 76 countries do fund it?! I believe in a quote from Richard Branson, “do not accept the unacceptable’, so I wanted to change this.
In December 2016, after writing letters, featuring in various media and trying to appeal to Pharmac and politicians, I along with other Pompe friends and rare disease people and organisations handed in a Petition to the House of Representatives, and to Dr Jonathan Coleman, Minister of Health, asking that the House consider, under urgency, the need for PHARMAC to have sufficient funding to implement its rare disease policy. We want to be given access to these treatments that will enable Kiwis to live a better quality of life with their families, for longer. To date I know that the Petition was tabled and was presented to the Health Select Committee and we hope to be able to present our case in person.
In November 2016, I was lucky enough to be asked to participate in a clinical trial for Amicus Therapeutics, for a new enzyme replacement therapy to treat Pompe. Since then I have been travelling every fortnight to Adelaide to receive this therapy. I firmly believe that I am already a little stronger, my breathing hasn’t declined this year and I am awaiting muscle testing to hopefully prove these positive outcomes. The trial lasts for 2 years, after which I am unsure as to what will happen next.
I am determined to stay mentally strong, I try to meditate when I can, and for me exercise is a fine balance, enough to maintain muscle and not too much to damage it. I try to eat a lower carbohydrate meal, eat wholefoods and look after my body, but like most I love chocolate so I do treat myself. I’m no saint!
I firmly believe in mind over matter. It’s not your situation that determines your mind, but the way that your mind determines your situation.