After the event Cole, Kevin, Svend, Jim and I came back to our house and Cole made pizza. While we where eating I had the chance to sit down with the boys and interview them about their journey. I wrote down my questions, and jotted down their answers in short form. So the interview transcribed here is not verbatim but as close as I can get too.
I must stay I really enjoyed getting to know the team and will be following their journey the whole way. See below for the interview:
Thank you all so much for today. Thank you for doing this great event , and taking time to do this interview with me for my blog. I have written down a few questions that I would like to ask, and I will be taking notes to transcribe to my blog.
Svend : jokingly : a few ( knods at papers) Laughs.
My first question is for Kevin:
Amanda : Kevin: When did you first learn about Avery’s diagnosis, and how did you react?
Kevin: about 1 week after her birth Kim and their family where called to the hospital and told that Avery has PKU. Sarah had gone to the hospital with her and they called to tell me. Sarah was sad and wanted to support Kim. Something Kim said stuck with them, Kim said ” I don’t even know how to be a mom and now have to deal with PKU too”
I immediately googled PKU and found both your ( Amanda’s Blog ) and Kevin Alexander’s video about PKU. That video really helped. Some things I learnt where scary, others gave me hope.
Amanda : Since the diagnosis and beginning this journey, how has PKU effected you or changed your life?
Kevin: Now we are constantly thinking about what we can do as a family to support to Avery and our family. Making sure Avery and our family has everything they need. That we can care for Avery when she comes to our house, and even when she comes over to our house on her own when she is older. That we would be able to mange her PKU. A family does everything they can do to help family. This could have been anything , but it was PKU. It would have been the same from us with anything else.
Amanda : I read on facebook that Sarah, your wife is pregnant, now that you know about PKU , does it make you think about her pregnancy and the baby?
Kevin: Yes , Sarah is pregnant. We have thought about her being a carrier now that we know her sister is. If we where to have a child with PKU , it would be a lot less stressful than a year ago.
It must be hard being away from your family. What is the hardest about being away right now?
Kevin: Well I was the one home with them, I was on prenatal leave. So I just miss the day to day. We have 2 kids. Charlotte who is 1.5 years and Jonathan who is 3. Of course one on the way too. I don’t miss the night take wake ups though!
Amanda : Svend what is your connection to PKU and how did you get involved in this event?
I have a cousin who emailed me , tells me she has a daughter living in Ottawa that has a daughter who has PKU. She told me she heard about a man who is riding across Canada for PKU. She thought I might be interested, since I have the time. I am retired and I like to ride. She thought maybe I could help him out. I do a lot of volunteer stuff. I checked out the website and looked at the list to see what I could do. I did not want to organize or talk to large groups of people. I thought maybe I might bike a little with them, or meet them somewhere, or drive a little? but then I thought If i was going to bike a little , why don’t I bike a little more? After John and Kevin came to my house to meet me it just progressed to more. I had not considered doing a ride across Canada, or if I would do the whole ride. It just sort of progressed. With the family connection it became more important.
Amanda : Kevin, How did you come up for the Ride across Canada?
Kevin: I had done the Bike ride for MS and was looking for some sort of event like running or riding that I could sign up for to show my support. I did a search and came up with a blog of a man Named Dick Michaux and his website : http://pkucycleamerica.com/ who did a ride across the states for his daughter and the National PKU Alliance. I was inspired and began looking for something like that in Canada. When I found CanPKU I saw John listed as the president and decided to email him to see if there was already something like this. John suggested I organize a walk a thon, but that just didn’t sit well with me. I wanted to do more. With the inspiration from Dick, and having 3 friends who rode across Canada years ago. I asked John about a bike ride and then reached out to my friends and asked them for information and advice. Then after connecting with Svend the idea to do it across Canada came about.
Amanda: Jim, When did you first learn about PKU and What Kevin was planning to do?
Jim: I am Kevin’s Father and I learnt about PKU when Kevin called to tell me his plan. You see it is his wife’s sister whose family this is , so we don’t have much of a connection. Kevin told me he was looking for a driver . I had 3 weeks left of my vacation so figured I could donate my van and drive with them from Victoria to Edmonton. Then if they cannot find another drive I can see about taking some leave.
Amanda : Team, do any of you have any experience with anything like this? or with fundraising?.
Jim : No not really. I travel though and have experience with long trips. My wife is use to me being away, and now there are no kids at home. I have the time. I do Volunteer for the Kinsmen Club as a member at the local club.
Svend: I have spent a lot of time biking. I have even gone on rides through a company that took me around Africa.
Kevin : Just with the MS bike ride .
Amanda : What did you do or how did you train for this event?
Kevin : Lots of training on an indoor stationary all winter. Then I tried to get outside for at least an hour a day. Increasing my KM. 3 times a week I tried for a longer ride. Weekends are hard with 2 kids. No real changes to my diet. We do have a lot of water, try to take rest breaks and snack breaks. Gels and protein bars are good for the longer parts.
Svend: Lots of long bike rides! Spin training . I had experience already, I am not in the same physical shape but I have an idea what to expect. I am one of those, don’t do what I do . My diet is coffee, ice cream and peanut butter.
Amanda : What has been the hardest thing so far .
Group : being away from family.
Kevin : My grandpa died 4 days into this, his funeral is today actually. So not being there for my family, Not being there for my mom, or my kids. Jonathan doesn’t understand death yet. I wish I was there to explain and help him grieve.
Amanda : I am sorry for your loss.
Amanda : Are you nervous going forward? what are you apprehensive about?
Kevin : BEARS! Also its a really tight schedule, so if anything happens it could really change the schedule.
Svend : body break down, injuries, sever weather . Anything that effects the schedule.
Amanda : I know you are only a few days into the Journey but what have your favourite spots been so far?
Kevin : Vancouver and Kamloops, anywhere we have been able to meet and interact with people. Its been nice to see the community come together. To talk to people and hear their stories.
Svend : Victoria as its a beautiful city, but same as Kevin, Vancouver and kamloops for getting to meet people.
Jim : Victoria. For the Kick off. It is a beautiful city. I enjoyed the parliaments, the harbour and that area down there. we got to stay in a hotel close to it. Also meeting Nicole, she is fabulous!
Amanda : Yah I use to love summers down town. All the tourists and when the causeway opens up. They have street performers and sales of arts and crafts. They are very talented.
Amanda : Going forward , what area are you most looking forward to visiting and why?
Svend: For me its Regina, I have family there, and Ottawa where my cousin with PKU lives and meeting them. Blood is thick. Family means a lot.
Jim : Edmonton ( jokes not because that is where he ends) If I was continuing on I have always had a dream to see St. Johns. I have made it to Newfoundland but not St.Johns.
Amanda : starting this process, what where your goals and how have they changed along the way?
Kevin : My only goal was to make a lot of money. Either to find a cure or to fund the home testing device. After talking to John and being more educated on PKU and the problems we face here in Canada, I learnt that Community and education was very important. So If that is what is needed that is what we will do. Also if we raise enough money we can have a voice in deciding what research to fund. Dick and NPKU do a lot of research so he might be considered.
Amanda : Has John told you about Dr. Jerry Vockley? I have met him twice and he is a wonderful doctor and speaker. If you ever get the chance to meet him or listen to him talk, please do. It is worth it. Dr. Vockley is doing a lot of research also specially with treatments for PKU. I really learnt a lot from his speech at BC PKU day this year and his hopes for the future of PKU. I did a summery of his talk on my blog. You might find it very interesting.
Kevin / Svend : We will look him up.
Svend: For me it was, squeaky wheel gets the oil. With all these other causes getting funding like Terry fox, cancer, diabetes, and all the runs and rides supporting something .. why not PKU? Now that PKU has been brought close to home and touched my family, why is it not supported in the same way? It needs funding too. The goal here is to get more people aware, maybe then the province’s and the Governments will change too. Also the more people who know, the more it will take the pressure and stress of new diagnosis.
Amanda : Thank you so much for taking this extra time to sit down and do this with me. I have a lot of notes here to go through and make into a solid blog post. Again , the words will not be per verbatim but as close as I can get them . I will post it as soon as I can and send you the link.
As we close here, any final words you would like to share?
Jim : Thank you to all the hosts. To everyone who has supported us. For everyone who has volunteered, offered lodging, giving meals and support. It is greatly appreciated . Since starting and talking to both Nicole and Amanda I have learnt a lot. As well as all the families along the way.
Kevin : Please see our website http://www.rideforpku.ca , read the blog, view the photos, make a donation, buy a t-shirt. Share share share as much as possible. Spread the word! tell all your family and friends. Since starting this It has spread, all my family and friends know. Even my church.
Svend: If you are reading this, please PASS IT ON!!! Like I said, squeaky wheel gets the oil. Spread the word. I have to say though Kudos to Kevin. Kevin ” Look what you have done, Look what you started!!”
We all congratulate Kevin!
For more information on Avery’s Ride for PKU please follow their blog, visit their website, like their page on facebook. Kevin and his team are still looking for free accommodations along the route. If you think you maybe able to help, please email me or any member of the team!
Here is the list of city’s where they are still seeking accommodation. Also please share this post!!
Tuesday, June 24 Davidson
Sunday, June 29 Portage La Prarie
Mon, June 30 & Tues Jul 1 Winnipeg
Wednesday, July 2 Prawda
Saturday, July 5 Ignace
Sunday, July 6 Upsala
Tuesday, July 8 Nipigon
Wednesday, July 9 Terrace Bay
fri jul 12 Wawa
sat jul 13 Batchawana Bay
tues jul 16 Espanola
weds jul 17 South Bay Mouth
thur jul 18 Tobermory
sat jul 20 Palmerston
sat aug 2 Trois Rivieres
tues aug 5 St. Pascal
weds aug 6 Edmunston
sun aug 10 Borden Carleton
wed aug 13 New Glasgow
thur aug 14 Port Hawkesberry
fri aug 15 North Sydney
sat aug 16 Argentia
(i should note that we do have a cabin offered north of Winnipeg, but it would be best if he could stay in the city).
Thanks everyone! let us know if you can help!
Thank you. Your PKU Friend Always,
Amanda
I am PKU Strong 