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Avery's Ride for PKU blog

I will be blogging about my preparation and planning leading up to the ride and will try to Blog as much as possible as I pedal across the country.

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  • Aug12Tue

    PEI and Nova Scotia

    August 12, 2014
    I last bogged about our big seafood dinner in PEI.  That turned out to be the start of a great couple of days on the Island.  On the rest day I was able to connect with a couple of old friends from my silver lake camp days.  Don Mowat and his family live on a dairy farm on the Island and Carey Wood and her husband Jeff decided a few years ago that they wanted to be farmers so they picked up and moved to PEI.  I admire their faith and courage to do something like that.  Carey and Don thanks for taking time out of your busy schedules to have lunch and hang out for the afternoon It was great connecting with you guys and reminiscing about old times at camp and catching up.  After catching up with Carey and Don I made it just in time to the start of the PKU picnic that was put on at the culinary institute of Canada.  They made a great low protein meal and everyone who attended received a name of someone who had PKU and their challenge was to eat a meal based on the phe tolerance level of that person.  It was an interesting way to educate the average person who may not know much about PKU and it really put the diet in perspective.  Great idea Colin and Tasha.  Again it was great to meet other families and individuals who have PKU or have family members with PKU.  Paul's story was especially interesting.  Paul was born a year or two after new born screening started in PEI and he was diagnosed with PKU.  Paul was also told at the age of 13 that he could go off of his diet.  It was not until years later that Paul was reading an article about PKU that suggested the diet should be for life.  Paul then got reconnected to his clinic and back on his diet and has seen benefits from this.  In contrast, Paul's sister was born a year before new born screening was started and she was undiagnosed and has PKU and is currently living in an institution as she is not able to live on her own due to the effects PKU has had on her brain.  One of the things that I was happy about the most at the PEI get together was that people from all levels of government were present at the picnic from the Mayor, the deputy Mayor, the MLA and the federal MP.  It was nice to have decision makers present to hear about PKU and the needs to PKU patients in PEI.  Colin, who has a son with PKU named Liam was also promised a chance to meet with the Liberal Caucus at some point in the future to discuss the needs of PKU patients on the Island.  PEI is one of the provinces that is not covering any food for those who need it and it is hopeful that the awareness created from events like the picnic and opportunities like Colin will have to speak to the government will help influence the provincial government to start assisting families with the costs of treatments that are desperately needed to for those with PKU to be healthy.  Thanks to Colin and Tasha and all the people who assisted them in planning a great event.  Colin had indicated that his company would match any donations up to 5000.00 and I was so excited to see him writing a cheque for that amount.  In total PEI raised over 10,000 at the PKU picnic.  

    After the picnic we were able to experience a little of the old home week that was happening in Charlottetown this week.  We went to a pub, where we saw two time gold medalist Heather Moyse so that was pretty cool.  We then went down to the midway and watched a friend of Colin participate in the harness racing that was taking place.  It turns out that his friend now lives in Ontario in Cambridge which is about 10 minutes from Kitchener.  We also met another one of Colin's friends who used to play for the Kitchener Rangers.  We made 2 Kitchener connections in Charlottetown PEI.  It was a really fun night but late and we had to be up for an interview with the CBC at 7:30 am.  Tasha and I made it to the CBC by 7:30 give or take a few minutes and had a chance to talk about PKU, the fundraiser and bike ride on the radio.  I think it went fairly well and I hope it can help promote more awareness on the Island.  My only regret when leaving PEI was that I did not have another week to spend there.  That is definitely a place I could see myself living.  Don't worry mom I'm not moving the kids to PEI, anytime soon.

    Because we had some connections in Halifax we used this rest day to drive there and will continue the ride from there tomorrow.  We did this because otherwise Halifax was a little to far out the of way to justify biking there, plus I don's have a lot of extra time with the impending birth of our son.  So we left Charlottetown and 4 hours later we arrived at the IWK hospital in Halifax.  We were given a tour of the new born screening lab which was similar to the lab we saw in Ottawa.  The lab in Halifax is the lab that tests our host Diane's blood as she is a PKU patient at the IWK PKU clinic.  Diane is also on Kuvan the only drug available to help treat PKU.  Just to give you an idea of the cost of Diane's medication she showed me her pharmacy bill and it was over 9000.00 for two weeks worth of medication.  She is required to take 18 pills a day and has seen a huge improvement in the amount of protein she is allowed to consume now.  Thankfully for Diane her medical insurance covers the cost of the medication but others are not as fortunate and at that price without some government assistance it would be nearly impossible to afford to be on this medication.  Diane had also planned a picnic and we met some other people connected to the clinic and were presented with a cheque from Diane for over 500.00.  Thanks Diane for all your help in promoting awareness and raising money.  Tonight we headed back to Diane's house and had donair pizza which is a local favourite here I'm told.  It was delicious but I think I'm going to struggle on the first few KM's on my bike tomorrow after all the food Ive been consuming over the last 3 days.  Tomorrow we head to New Glasgow and we also have a chance to meet with the minister of health for Nova Scotia at 4:30 so we are trying to figure out a way to bike the whole route tomorrow as well as get back into Halifax for a meeting with the minister.  Hopefully we can work that all out.    


    On Wednesday, August 13, 2014, Liz said:

    Kevin you write fantastic reports. I love the approach the PEI folks took, of having each guest eat the permitted diet of one named PKU person, very instructive I am sure. At the same time I am horrified at the cost of the drug for two weeks...gotta say that sounds immoral to me, i.e. to charge so much. I realize the manufacturer may have invested millions in the research to bring the drug to market, but at that price it seems there might be a tad too much profit-taking? It's no wonder that governments feel they can't afford to cover it...


    On Wednesday, August 13, 2014, Diane Little said:

    Kevin, it was great to host you guys yesterday and I just want to thank you for everything that you and Svend are doing to bring awareness to PKU.. I will see you and John later today and hopefully this meeting with the minister will go great!!

    Keep pedalling .. you will see your family soon!!


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