I am terrible with secrets, and I have been holding a big one for weeks! My heart is over joyed and pouring out happiness and excitement to finally be able to share this great news!!

The British Columbia Health Minister Terry Lake announced today, a $250.00 subsidy for low protein foods. This subsidy is for patients with metabolic disorders in BC such as PKU and Maple Syrup Urine disease who rely on these specially modified medical necessary low protein foods to maintain healthy blood levels and prevent mental retardation.

I have been working towards this goal since 2008 when I first made the decision to open up my life with PKU to the world and use my voice to become an advocate. I have always drempt of this day. I remember in 2008 when I first found my passion for PKU and organized my first walk a thon for PKU at Jaun De Fuca rec centre with the help of my friends Nick and Tyrai, Laura, Nick and Daphne. This walk a thon drew the attention of CanPKU president John Adams, and its where I first met little baby Roise and her mother Nicole Pallone, whom later became the vice president of CanPKU. When I was organizing that walk a thon, my goal was to raise money for a low protein food bank.

Over the years my involvement in the PKU community has evolved and I have been an active advocate with CanPKU and there fabulous BC Advocate Team. We have all worked tirelessly on making this dream a reality. I could not be more thrilled today.  I feel like everything I have done has lead to this moment and I cannot help but cry happy tears. I feel like this will impact so many lives, and change them for the better. BC PKU residents can finally achieve the quality of life they deserve.

Though the  journey is not over, and there is still much work to do with our government and funding for KUVAN, this is a huge step forward and I am thrilled our voices have been heard, our hard work has paid off!

For myself, this means the worry of complianing with diet is lessened, it will be easier to maintain my blood phe levels in safe range. My abilty to control my levels will not be direclty effected by my finaces. It will be easier to acheieve my health goals and to one day have a baby of my own.

For years I have put off having a baby because of the pre conception diet women with PKU are required to be on for 6 months prior to conception and the entire pregancy. You see, whatever my blood phe levels are , are double in the uterus and are toxic to a fetus. So if my levels are high, If I cannot afford low protein foods and keep them low, my baby could be born mentally retarded or deformed. The risk has always been to high for Cole and I to justify. I never was confident that I could maintain my levels low enough to be safe , because I could  not afford the low protein foods I required to stay on diet.

This announcement today, changes that and gives me the confidence and makes my dream of mother hood a real possibilty.

I am truly blessed and grateful to Minister Terry Lake, Bill Bennett and CanPKU for their support and hard work, to the BC Advocacy team and all my friends and family who took time to learn about PKU , to support my efforts and campaigning. To all of those who took the time to read my blogs, to share my story, like my page, Sign the petitions, read and share my radio interviews, news interviews and the CanPKU media Campaign. All of you helped make this possible. You all helped change my life , and all 177 PKU patients in BC and the 32 other BC Patients who require low protein foods such as those who suffer from Maple Syrup Urine Disease.

 

Now I know that everyone has alot of questions so I will do my best to answer what I can with the information that I have.

This is a monthly subsidy that is applied to the BC residents account at BC Children’s Hospital Special Products Distribution Centre. It is open to all 177 PKU patients and the 32 others who require them. There is no enrolment application, it is not a pay now be reimburse later.

This program will be through the same program that already funds our low protein formula. All orders HAVE to go through Special Products distribution centre. You call in and order up to 250 dollars and it is covered! Anything after that is our responsibility. You have 250 a month. So my plan is to one month order all my baking mixes, and the next my pasta and other foods.

I know everyone is worried about the limited stock at SPCD and that they don’t have the cambrooke pre made foods, or country sunrise products. We are already talking to the staff at SPDC on how to remedy this and possibly get them more space or a new location as well as freezers and more stock!

The program and its leaders will be taking a lot of feedback from the PKU community , no doubt there will be some kinks to work out along the way and the first little while will be trial and error as the program grows.

This is all the information I currently have , Please feel free to contact me with any questions or comments and I will try my best to get them answered.

So for today, Celebrate! and spread the news!

The new program starts January 1st 2014!

 

Thank you again to everyone who made this possible. My heart is so full of joy, I am so happy! We all should be proud today!