If you are from British Columbia, you know we have a provincial election on May 14 th 2013. In 2 weeks. If you are like me, you really honestly don’t know who to vote for. Honestly until this Year I have never really focused on it to much or paid a lot of attention to politicians They always just seem to dance around issues, creating more confusion then help. So this year I set out on my own agenda to learn as much as I could to help me make my own personal, and informed decision  Based on factors that concerned me and would help me decide how to vote. Obviously one of those key factors was and is PKU. I want an MLA who will support me and help strength the voice of others like me. So on Tuesday morning I spent my day off researching campaign parties, and their platforms. As well as writing a list of questions I would ask if give the opportunity. I also emailed each party leader and each party candidate. My first reply came from the conservatives  it was no help at all and a generic response directing me to their website and “article 5 ” of there health care platform. This was not the answer I was looking for. i wanted to see if I got any personal responses. Who felt I was important enough to respond to and connect with.  To my surprise I got a personal email from our local kamloops MLA Terry Lake. I was sceptical as I had tried to engage him in the past with information on PKU and felt brushed off and un supported. However Mr. Lake extended an invitation to meet with me and discuss my concerns and questions . I did not know what to expect, if he would be fake? if he would lie to me and make me promises? if he would seem uninterested or supportive? needless to say I was anxious. I did not know what to expect. I set a meeting to meet with him today and began to prepare myself for a strong and factual exchange while taking the opportunity to educate Mr. Lake on PKU and share some of my life with him. I took a big bag of materials with me that included receipts of my medical foods, a blood dot card and sample, my food list book, my food tracking note book, samples of my food and formula, the CanPKU Comprehensive brain protection strategy plan , my petition and anything I could find to make this very real for him.

I met with Mr. Lake at 12:40 pm today and he was gracious enough to extend me an hour of his time. I found him to be responsive, interested  educated aware and supportive. Not what I was expecting , however I am very please. We had a lengthy conversation  I was able to get my voice herd from an adults perspective.  We talked about MPKU and my desire to have my own biological child , the side effects I have suffered, the experiences I have endured, my many hospital admissions, my struggles in school and holding a job, supporting myself and finical burden on my spouse and I .

Mr. Lake asked me a lot of questions and took a lot of notes. He did not see fake , he did not offer promises such as ” if im elected” he did not seem just out to get my vote. He was interested and concerned.  He was also realistic and understood the barricade of politics and funding, money and big drug companies. He kept all the materials I gave him. We of course discussed KUVAN and peg pal ,  the beneifts, the cost and how many patients in BC it would benfit. He did not close down that discussion and understood the benefits. We of course spent alot of time talking about the physiological side of PKU which was a point I really wanted to get across. It is not just all about treatment, we need supports. We talked in length about that and talked about some key points from the CanPKU brain protection strategy plan.  I did not feel rushed and that I only had a few minutes to have my message herd. I actually felt very relaxed and like we where just having a discussion. Exchanging facts.

We also talked about his life as a Veterinarian and his experiences with treating animals that had  renal failure with low protein food and how animals can have PKU too. He knew from those experiences how costly low protein food could be. He recognized its not the same thing, but it painted a picture. I met his daughter who is studying I think , a masters in science and health who had learnt a bit about PKU in her classes. Mr. Lake liked my idea of guest speaking at nursing classes about PKU to help extend the education. He also gave me some names of media contact who might be willing to help spread my story.

Mr.Lake understood the effects that a MPKU mothers levels could have on a unborn baby and the risk and expense that child would cost the government  as well as children who are already in the system from mothers who cannot look after then due to being off diet.

Mr.Lake noted the fact that we have a strong voice in the cabinet ministries from Bill Bennett and believes that the 2 of them together in the same corner can help us even more.

He has offered his support and has agreed to meet with me again and to continue to work with me.

Even though we spent the majority of our time speaking about PKU , He did take the time to answer my other questions regarding my professional interests as a LPN and my concerns with out health care. He even took the time to discuss our local economy and the potential of the AJAX mine here in kamloops, as well as environmental concerns and family issues. Even education.

Near the end of my meeting I walked him through a few days in my note book on what my meals looked liked, how restricted I was and what happens when I don’t have my food prepared and baked a head of time. He could understand just how much more that there is and that one does not consider that we go through on a daily basis.

I ended the meeting by extending him an invite to the “kamloops walk for PKU ” on june 1st. and even though its 2 weeks after the election and no one know where they will be at he said I could send him an invite via email and he wrote it down.

All in all, I feel very good after meeting with Terry Lake and I am so glad he took the time to meet with me. That he gave me the opportunity face to face to have my voice herd , specially during this busy time of campaigning. That personal connection will go a very long way when I take to the polls on May 14 th.

Either i am incredible naive and Mr. Lake is a very very good politician or He really is all that he portrays  Currently as of today, I am learning towards the latter ,And that makes me feel pretty at ease and confident that I have found a local allie in advocacy for PKU!