Camp MagniPHEque wants your help! Which activity would you rather have at camp? Comment below to let us know. Don’t forget to sign up before the early bird date (Rare Day Feb 28th) and save $30 per person!http://canpku.org/portfolios/camp-magnipheque
It is my pleasure to announce the Jamberry nails fundraiser for CanPKU ‘s
“CAMP MAGNIPHEQUE!”
My Cousin and dear friend Tyra is a jamberry nails consultant and she will be hosting an online fb event fundraiser From January 7th to January 14th . Tyra will be donating her commission from the sales at the event to Canadian PKU And allied disorders INC for our first Canadian PKU Camp
“CAMP MAGNIPHEQUE!”
http://canpku.org/canadian-pku-camp
For those who are not familiar with Jamberry nails it is nail and hand care products that are salon quality and five free. Their main product is vinyl nail wraps, but there is so much more. If you want to check out the website it is tyraschalles.jamberry.com ( Please wait for the event page to place an order)
How it works :
On Saturday January 7th Tyra will create a public event page on facebook and I will share the link on my blog and various PKU fb groups. You must join the event page and any order you place with tyra through the event between jan 7th and jan 14th goes towards the fundraiser.
In honor of the fundraiser, Tyra has also custom designed a special nail wrap specifically for PKU. This wrap is only available during this event . The wrap is in honor of CanPKU and features our Canadian PKU colours, ribbon and the wording “PKU” ! This wrap as well as those available in the brochure and link above are all available for purchase and count towards the fundraiser.
Here is a sneak peak!
This fundraiser is only open to Canada , America , UK , Australia. Mexico and New Zealand Residents only.
Please be sure to look for the event link when I post it on Saturday and join our event. Please share with your friends and family. Tyra and I look forward to joining you and raising funds for our camp!
Today, May 28th 2016 Brienna Wells and myself Co-Hosted the 3rd Annual Kamloops Walk for PKU at MacArthur Island Kamloops BC Canada. From 1:3o to 3:30 pm . We had around 60 attendees including the Honorable BC Health Minister and local MLA Terry Lake, Kamloops City Council member Arjun Singh . As well as The President of Canadian PKU and Allied Disorders John Adams himself. Who flew in from Toronto to join us on this rainy overcast day.
We spent the first few moments socializing and mingling. I got to meet my daughter Madelyn to Terry Lake. She had just woken up so she was shy on smiles for the first part of the day.
We opened the event with a few works from John Adams , who presented Terry Lake with a friend of PKU award. Terry said a few words and talked about his part in our PKU community as well as how we met and what we have done so far , with mention of Kuvan in the future. Councillor Arjun said a few words, He even mentioned he reads my blog!!!! What an honour! After I thanked everyone for coming and how great it was to see so many supports. I thanked Bri for her hard work and dedication. This event would not have been possible with out her! John then announced the walk and everyone headed out in small groups around the park. Cole, myself, Bri and Amanda J stayed behind. I did walk out to the end of the trail to meet everyone on their way back to take photos, and I had the pleasure of walking back with Councillor Arjun. We where able to connect briefly and discuss some of my history with diet . I do hope to keep in contact and further our conversation in the future.
After we enjoyed refreshments of cake donated by Costco and low protein cupcakes and donuts baked by Bri. Coffee and regular donuts donated from Tim Hortons. We had another chance to bid on the Silent Auction and then we wrapped up the event and announced our grand total.
Insert Drum Roll Here:
We raised 1500 Dollars for Canadian PKU and Allied Disorders INC !
The Event was a huge success. Our biggest yet. It was truly amazing to see so many families out showing their support of our community. It made me quiet emotional. I had trouble speaking and looking back now I wish I had of said more. OR at least taken Madelyn out of her Ergo carrier so she could see Terry Lake , or we could have had a photo with her actually looking out.
Madelyn was awake until Terry Left then she passed out on my chest in her carrier till the end.
For those of you who are wondering, Madelyn is doing very well. She is the light of our lives and such a wonderful baby. The changes and advancements I see in her daily astound me.
If you had of told me years ago that one day I would be standing in front of a crowd of PKU families , friends and supporters next to the BC Health Minister holding my baby girl on my chest I could not have imagined. Madelyn is so healthy and she is because of my amazing control of my diet, which I could not have done with out the Low Protein Food Subsidy that Terry Lake made possible.
So in away, with out Terry Lake, Madelyn would not be with us today. He has changed out lives, and the lives of all the PKU patients in BC. We are forever grateful.
So wraps up another annual PKU event. Chalked up as a great success and already has my wheels turning for next year. Always striving for Bigger and better. Ways to improve, things to change or add . We learn each time.
If you would like to host a PKU Walk-A-thon please feel free to contact me for advice or visit the new CanPKU website.
PKU or Phenylketonuria is a rare metabolic and genetic disease where people who have PKU are born with out the enzyme to break down an amino acid in protein called Phenylalanine into tyrosine. The more protein they consume the more phenylalanine is consumed and it accumulates in the blood and causes neurological impairments leading to mental disabilities and brain damage. PKU is a serious disease that affects the brain but can be controlled with a restricted low protein medical diet. A person with PKU must drink a special medical formula, eat medical low protein imitation and chemically altered foods and test their blood regularly to keep phenylalanine levels in a safe and non toxic range.
The PKU diet is for life. The is one drug currently approved in the treatment of PKU but it is not covered in most canadian provinces.
On May 28th 2016 we will be hosting our “kamloops walk for PKU” At MacArthur Island from 130 pm to 330 pm and we hope to raise $1000.00 .
100 % of Donations will donated directly to Canadian PKU and Allied disorders INC to help fund education seminars, socials, patient suppots, research, and lobbying campaigns for coverage of medical supports in each province.
Please consider making a donation to support PKU and CanPKU.
CanPKU is not a charity so therefore we cannot issue tax recpits.
May is PKU awareness month!
Join me in the 31 day #PKUPhotoaday Challenge!
— with Grayson McGill andChad Farquharson
This is my friend Adrienne Marie‘s Daughter Izzy . Like me she has a#raredisease. In honour of #rarediseaseday I would like to share a bit about Izzy and Adrienne Marie. Izzy suffers for #Ed or Epidermolysis Bullosa. A rare skin disease. Also known as Butterfly Disease. Like my PKU , it is a genetic disease.
Izzy has blisters that bleed; all over her body and requires 24 hour care, daily dressing changes and even has a feeding tube. This is a lifelong disease. It is very painful and Izzy needs to wear special clothing to protect her skin.
Epidermolysis Bullosa (EB) is a group of genetic conditions, together affecting approximately 1 in 17-20,000 live births, with an estimated 500,000 people worldwide living with EB. The condition is always painful, frequently very disabling and life threatening and, in its most severe forms, fatal in infancy. EB affects both
genders and every race and ethnicity.
To learn more about ED please visit :
http://debracanada.org/understandeb/
or watch this video :
https://www.youtube.com/watch?v=kFV5tjo80QQ&feature=youtu.be
In honor of #rarediseaseday 2016 I am going to share a personal story with you.
Many of you already know that I have PKU. To the point your probably all sick of hearing about it. And over the last 40 weeks you have been flooded with information about #MaternalPKU or #MPKU and how PKU affects my pregnancy. But what you may not know, is that until I was an adult, I was told that I could never have children.
I was told that due to my PKU, that I could not carry a normal healthy baby. That If was to get pregnant the chances of my baby being born mentally handicapped , disabled or deformed was extremely high. At the time it was recommended that women with PKU do not have babies . At the time it was recommended abortion and adoption.
I have always wanted to be a mother, I dreamt of being pregnant and having a baby someday. I tried to convince myself it didn’t matter and I told everyone I could not.
At age 18 , the BC PKU Adult Clinic sat me down and told me about all the advancements and research and that one day if I worked really hard my dreams could become true. I could not accept it at first.
You see for a women with PKU we must be so very careful and follow an even more restricted Maternal PKU diet. It is recommended that you have low blood phenylalanine levels for up to 6 months before even conceiving a baby. As whatever your blood phe levels are , they are about 2.0 times higher in the uterus. If your levels are not in a safe range in yourself, it created a toxic environment to grow a baby. Leading to deformities, mental disabilities, handicaps, small head syndrome, learning disabilities, heart issues, and even death. To be able to carry a baby to term that is healthy and safe , a PKU women must follow a much more restricted diet. Do blood tests 2 to 3 times a week, and much much more. AT the time , to me it sounded impossible. I was already having enough trouble trying to manage my own PKU low protein diet and struggled with paying for my special medical foods. I did not follow my diet as closely as you need to, I suffered as a teenger by eating things i should not , not weighing or recording my intake and didn’t even do regular blood tests. I suffered from high levels and made myself very sick.
After meeting Cole and falling in love, I still tried to tell myself it was not a good idea to ever have kids and tried to not think about it. But the clinic had opened that door and my heart dreamed to the point of self torture. meeting Cole and falling in love with him changed my life and set me on a much better path. He inspired me to do better, to get myself healthy and to love myself too.
in 2008, Cole and I where invited to a maternal PKU seminar in vancouver where we met other women my age, and we met Nicole Le Vecque. She had recently given birth to a beautiful baby boy. She had a sucessful PKU pregnancy. I stared at her in awe and this perfectly healthy baby boy! She inspired me and showed me dreams can one day come true. This is when I really started to accept my PKU and notice how much it was really affecting me and my health. This is when I first started to advocate for PKU and improving qualtiy of life. It was shortly after I organised my first walk and became involved with Canadian PKU and allied disorders.
Over the years life got in in the way and I doubted my ability to have a healthy pregnancy. I battled with many health issues, including chronic major depression, anxiety and multiple physical injuries. I lost all faith that we would ever have children.
I never gave up on my advocacy work and my dream still lingered in my secret heart.
Year after year being involved in the community, working with and having the support of CanPKU I watched my small rare community and world around me expand. Doors and opportunities opening and awaiting me!
Over the past 3 years life has changed so much, so has PKU treatments , research and there has been improvements to the quality of life for people like me.
One of the biggest was the low protein food funding we where awarded by Terry Lake. Having the food covered and not struggle to buy my low protein foods that help keep my brain healthy was a huge step forward towards my dream of one day being a mother. having these foods on hands and not having to worry about how i would make the diet took a huge weight of my shoulders.
Fast forward to today, A rare day. Leap year 2016 and #Rarediseaseday and I am 41 weeks pregnant tomorrow. Dreams really do come true. I am#PKUstrong. I am #PKUproud. PKU does not run my life, I run my PKU and I am happy , healthy and about to have my life long dream come true before me! I cant wait to meet this beautiful baby to be and start this next chapter of our lives together.
A huge shout out to everyone who has supported me over the years and through this journey. I could not have done this with all of you. To Cole, I love you so much more then words can say!
Happy Rare Disease Day everyone!
www.canpku.org
https://www.raredisorders.ca/
https://globalgenes.org/
http://www.rarediseaseday.org/
www.npkua.org
WOW! what an incredible day!
The weather was a gorgeous 31 degrees and we had a sucessful walk where we raised $1287 dollars for CanPKU. We had around 25 walkers. 3 adults and 2 kids with PKU. Tons of food and lots of fun!
After the event, the other 2 pku adults ( Brittany from kelowna and Amanda my friend from kamloops) came over for dinner. I made us all low protein spaghetti. We hung out and shared our pku experiences, while bonding and getting to know brittany . We made summer plans to meet more often! maybe even a BC Adult get together in the future?
Amanda Brittany and I drank Davids tea and played mario wii. It was a nice way to unwind after a busy day.
Now the house is clean and quite and I am off for a bubble bath!!
To see more photos from the event please visit my facebook fan page!
May is PKU Awareness month. In honour of PKU awareness I am partaking in a PKU photoaday challenge and I am organizing a kamloops Walk for PKU.
The Walk will be held on May 30th at MacArthur Island Sports center, in kamloops from 1 to 4 pm. We will have refreshments and a silent auction. Donations raised will go directly to CanPKU to help fund other events, education days, seminars, advocacy and lobbying campaigns and more.
The PKU photo a day challenge is online through facebook and instagram. 
To partake upload a photo using the hashtag #PKUphotoaday . Each number corresponds to the day of the month.
How are you celebrating PKU Awareness month?
I am PKU Strong 