The Living ProofCANADIAN TRANSPLANT ASSOCIATION ISSUE #42

IN THIS ISSUE

Rocky Mountaineer Train For Heroes

Tribute to a Transplant Surgeon

Kaidyn’s Dream

Addison’s Story

3

CTA President’s Report for 2014

Aubrey Goldstein, MD CTA President

The CTA had a very good year in 2014. Much was accomplished by your Board. We welcomed new members to the Executive. These included Bianca Segatto as our Vice President for Eastern Canada, and Mike Sullivan as our new Treasurer. Both have played significant roles in improving the areas of their responsibility. Bianca in helping to unify our approach to Transplant Trot events across the country, and Mike in coordinating our financial reporting and tax receipts. In 2015 we will have the ability to provide tax receipts at events in every province thanks to Mike’s efforts.

Speaking of the Transplant Trot, we had an increase in these events across the country and all of them were successful in raising awareness of organ and tissue donations while raising funds for our future work. In the coming year we know that more of these events are planned for new cities and towns. Should you wish to hold one in your area please contact us at cta@txworks.ca.

The 2014 Canadian Transplant Games were held in Moncton, New Brunswick. Monique McTeirnan Black and Diane Stacey co-chaired a tremendously successful event. The Opening Ceremonies provided a wonderful start to the week, the events were held at top quality venues, the Closing Ceremonies and Gala were a delight. During the week we enjoyed a special comedy evening featuring Mike McDonald, a well-known Canadian comic who recently had a liver transplant. He uses his talents to speak about his transplant and the need for organ and tissue donation. The people and city of Moncton welcomed us with open arms and many of us got to see the beauty of the area during our time between events and as part of scheduled family events run by the Local Organising Committee. I don’t mind repeating that it was a very successful event.

Your CTA Board met for two days prior to the Games. We discussed many different issues the CTA is facing in the coming years and our business plan. The most significant issues are the cost of running the CTA and the low membership considering the number of people transplanted every year. I discussed these issues at the Annual General Meeting and Mike Sullivan, our National Treasurer provided a financial update to those attending our AGM. One of the ways we hope to deal with the financial crunch we’re facing is to have two year memberships. It seems that the years in between Games people let their memberships go renewing

only during the years the Games are on. Subsequently, we have decided to move toward a two year format to in order to maintain membership levels.

At the Moncton Games we announced that Toronto had won the bid for the 2016 CTG. The Ontario bid committee, originally led by Richard Ayuen has been hard at work organising the event sites, accommodations, arranging for meals, and transportation, among other Games requirements. I’m sure all of you will want to join us in Toronto for what promises to be the biggest Canadian Transplant Games we’ve ever held.

Requests were put out for application to fill positions on the Board in September 2014. We were fortunate to have a good number of applications for open positions on the Board. The review committees for these applications have met, discussed and interviewed the top candidates and gave their suggestions to the Executive at our December meeting. Our incoming Secretary for 2015 (2 year term renewable twice for all Board/Executive positions) is Robert Sallows. The new Alberta Provincial Director is Shawna Rivait. The new Team Manager is Niva Segatto. I want to thank Kathy Tachynski for 17 years of work on our Board, most of it as Secretary. She’s promised to help Rob get up to speed with this very important job. Tara Brady had been our Team Manager and she did a fantastic job in Durban, South Africa. She had help from a number of great volunteers as there is no way one person can attend all event venues, meetings (usually twice a day) and meet with all the team members who require information about event venue locations and times of buses, where to get health and injury assistance, and on and on. Tara did an amazing job for all the Canadian participants.

The Executive and the Board meet on an alternate monthly basis. Should you have any questions for the Executive or Board please check the website for their email address and feel free to contact any one of us. We need your input and assistance as we are true volunteers. We each have family and work responsibilities in addition to our CTA positions. Please look for updates on our website and official Facebook page. If you have time to volunteer on the Board, we are still looking for provincial Directors for Manitoba, Québec, Nova Scotia, and Newfoundland and Labrador.

From my family to yours, all the best of health and happiness in 2015 and beyond.

BOARD OF DIRECTORS

President – Aubrey Goldstein aubreygoldstein@txworks.ca

Past President – Dave Smith davidsmith@txworks.ca

Vice-President (West) – Jennifer Holman jenniferholman@txworks.ca

Vice-President (East) – Bianca Segatto bsegatto@txworks.ca

Treasurer – Michael Sullivan msullivan@txworks.ca

Secretary – Robert Sallows rsallows@txworks.ca

Membership Director – Neil Folkins neilfolkins@txworks.ca

Team Manager – Niva Segatto nivasegatto@txworks.ca

PROVINCIAL DIRECTORS

British Columbia – Margaret Benson mmbenson@txworks.ca

Alberta – Shauna Rivait shaunarivait@txworks.ca

Saskatchewan – Phil Gleim philgleim@txworks.ca

Ontario – Sandra Holdsworth ctaontario@bell.net

Quebec – Gaston Martin martingaston@videotron.ca

Atlantic – Mark Black markblack78@hotmail.com

In this Issue

CTA President’s Report for 2014 ..................................................... 3

CTA-BC New Year’s Report ............................................................ 4

Ontario Report ................................................................................. 5

CTA Saskatchewan .......................................................................... 6

Alberta Provincial Updates ............................................................... 7

Rocky Mountaineer Train For Heroes ............................................. 8

Tribute to my Kidney Transplant Surgeon – Dr. William Lakey ......................................................................... 12

Kaidyn’s Dream .............................................................................. 13

Chaussez-vous pour le foie / Lace up for live 2014 ......................... 14

The Marilyn Denis show celebrates Everyday Heroes ................... 15

Part of a Team ................................................................................. 16

Heart Recipients Meet doing a Commercial for The Heart & Stroke Foundation ............................................... 17

CTA National Treasurers Report ................................................... 17

Addison’s Story ............................................................................... 18

Toronto to Host the Next Canadian Transplant Games in 2016 .............................................................. 19

Publication Mail Agreement Number: 40033698

We acknowledge and thank all who supplied photos for the Living Proof.

20th World Transplant Games, Mar del Plata, Argentina 2015

The Officers and Councillors of the World Transplant Games Federation are pleased to announce that the 20th World Transplant Games will be held in Mar del Plata, Argentina from 23rd to 30th August 2015.

4 5

CTA-BC New Year’s Report

Submitted by Margaret Benson

2014 showed great success for CTA-BC – we saw a rise in members, many new family members, more participation in a wider variety of events throughout the province and we even have the development of an offshoot CTA-BC chapter in Nanaimo.

Our largest event and most financially successful, the Transplant Trot, saw over 400 participants, 25 volunteers, 43 sponsors and six transplant related booths on site. Starting with a Zumba warm-up, then a proclamation of National Organ and Tissue Donation Week (NOTDAW) for the city of Burnaby by Mayor Corrigan, announcements of all the cities and towns in BC also proclaiming NOTDAW and finally Gift of Life pins presented to living donors and donor families in attendance, the Trot officially started. The 5 & 8-kilometer walk/run went on without a hitch with each participant receiving a CTA embossed chocolate medallion as they crossed the finish line.

Also at the Trot, BC’s 2014 youth award winner, double heart transplant recipient, Robbie Thompson, was presented with the award by 3 year-old Addison MacArthur-Yong, a fellow heart transplant recipient and new CTA member. It was truly a magical day.

We are well on our way organizing this year’s Trot, Sunday, April 12th at 10am and looking forward to an even more successful event.

CTA-BC members are always honoured to participate in a number of BC Transplant sponsored events. Representing the recipients of BC, to thank and acknowledge donor and donor families, we had a presence at Vancouver General Hospital’s Pastoral Care organ donor memorial service. Some of our members attended the Heart Home annual Christmas party and the 90th anniversary celebration of the Jewish Women’s Association of Vancouver.

CTA-BC continues to have a strong presence in the dragon boat community with the Gift of Life and O2P teams. Some members have joined highly competitive teams and traveled to the USA and overseas representing the transplant community.

Another highlight for some CTA-BC members was the National Transplant Games in Moncton, NB. BC sent 13 athletes, two of whom were youth and many wonderful supporters. For a small group we represented BC well taking home 38 medals in total. As Jun Burnandas, one of our athletes states:

“I went to New Brunswick with the mindset that I’d be seeing familiar friendly faces and experiencing the camaraderie of kindred souls

celebrating the gift of life. It also gave me an appreciation for the wonderful people who made the greatest decision one can make – to donate their organs and save lives. It’s a narrative of the giver and the gifted as much as it is an athletic experience, and we will forever be thankful for our organ donor’s selfless gift. The transplant games are one big family reunion. It doesn’t matter what organ transplant one has received; the struggles and health challenges we experienced were the same.

The games were phenomenal. They had that small town feel to them, where you feel welcome not as a participant but as a member of the family and it was great seeing familiar faces and new ones. From the opening ceremony, through all of the athletic events, to the evening festivities after the games (I’m thinking Karaoke night), to the trip to Shediac and the closing gala, this was one memorable trip for me. I have competed in sports internationally, and I must say the 2014 Moncton Games experience ranks up there in my book. Thank you Moncton organizing committee and volunteers! Well done! See you in Toronto in 2016.”

Team BC echoes Jun’s statements and thanks Moncton for the relaxed atmosphere of the games and we loved all the special touches added to each and every day.

CTA-BC continues to be a strong part of the community and we look forward to creating new projects in 2015 such as a summer BBQ , bowling nights and a Transplant evening celebration in the fall. Best wishes to all our transplant communities throughout Canada.

Ontario Report

Submitted by Sandra Holdsworth, Provincial Director

The Ontario Division of the Canadian Transplant Association has been very busy over the last few years developing our Board and building relationships with various stakeholders.

We have a full Executive Committee in place as well as a full board, which includes, a Donor Family Liaison, Parent Liaison & Youth Liaison. These positions were put in place to help us better liaise with members, to connect with them and to see what their vision and goals are for the organization and to increase awareness of Organ & Tissue Donation in Ontario.

We have been very successful with two of our Transplant Trot events, the London Trot in Memory of Leslie Petter and the Waterloo Trot. Last year we held our first event in Bruce Grey, and we have plans to hold more in Brantford, and the Toronto & Ottawa areas.

We are also hosting the 5th Annual Table Tennis Tournament in honour of Jonathon Talbot, with funds raised

to help send donor families to the Transplant Games. We have also held other events, like the London Major Baseball Game Day, Zumba Dance event as well as Lawn Bowling & Washer Toss Training for those who attended the Games in Moncton last summer.

We sent a full team to Moncton, with 51 athletes, including 15 youth and 82 supporters. Ontario made up most of the attendees and came home with many medals and wonderful memories.

This past November, we hosted our Annual Awards Afternoon, where we presented the Provincial Youth Award in Memory of Thomas Quinet (awarded to Ryley Mitchell) the Leslie Petter Memorial Award (awarded to Devan Cruickshanks) and the Victor Davis Memorial Award (awarded to Donna Fleming & Team Transplant). We are very proud of all the recipients and nominees.

Recently, our focus has been on developing relationships with

Trillium Gift of Life Network, the Minister of Health, local hospitals, other awareness groups, and others committed to promoting organ donation. By doing so, we have developed many new relationships and interest in not only the mission of the Canadian Transplant Association, but also the Transplant Games. This has been demonstrated by the many new athletes we had attend the games in Moncton and the number of people interested in the 2016 Canadian Transplant Games.

The 2016 Canadian Transplant Games will be our main focus for the remainder of 2015 and 2016. We plan to hold fundraisers for the Games. Many of our board members are on the Executive Committee for the Games as well as the Local Organizing Committee. The Games are CTA’s main platform for us to showcase the success of organ donation & transplantation and we are looking forward to hosting the games in Toronto in 2016.

We sent a full team to Moncton, with 51 athletes, including 15 youth and 82 supporters. Ontario made up most of the attendees and came home with many medals and wonderful memories.

6 7

CTA Saskatchewan

Submitted by Phil Gleim, CTA Saskatchewan Provincial Director

2014 was a very busy and rewarding year for CTA Saskatchewan. We began the year by holding our annual steak night at David’s Restaurant and Lounge in Saskatoon. Approximately 170 people attended, helping us to realize a profit of $3,300.

In April we set up an awareness table and sold 50/50 tickets at a Saskatoon Auction. On May 11th just under 200 runners and walkers joined us at our annual Transplant Trot which was held along the banks of the Saskatchewan River in Saskatoon. Major sponsors included SIGA, Montana Construction, TH Vac Services, Wheaton Pontiac, Red

Head Equipment, and 33rd Street Automotive. A profit of $4,400 was raised for the CTA.

Our final fundraiser of the year was a raffle. All prizes were donated which included a hot air balloon ride for two; a night for two at the Sheraton Cavalier Hotel in Saskatoon; and a $100 gift card to Earls Restaurant. This fundraiser generated a profit of just over $2,000.

The highlight of the year for many of us was our participation in the CTA Games which were held in Moncton, NB in early July. Approximately 30 people from CTA Saskatchewan attended the games. This included athletes as well as friends and family members. Everyone was treated to a wonderful week of friendly competition and maritime hospitality.

Following the games, three members of CTA Saskatchewan volunteered to be part of a committee whose goal is to incorporate the province of Ontario’s “One Life Many Gifts” curriculum

into Saskatchewan Schools. This committee is being led by Transplant Surgeon, Dr. Mike Moser, who was part of the group in Ontario who ultimately succeeded in making Organ and Tissue Donation Awareness compulsory in Ontario Schools. To date we have had a number of meetings, including one with a High School Principal in Saskatoon. A teacher in his school has volunteered to include the introductory unit into his Grade 11 Christian Ethics Class.

We ended 2014 with a Christmas Social at a Saskatoon Restaurant. Nearly everyone in our CTA Saskatchewan Membership attended. We enjoyed a turkey supper with all the trimmings and then a gift exchange. 2014 was a wonderful year for CTA Saskatchewan. I would like to take this opportunity to thank our membership for all their hard work and commitment to promoting organ and tissue donation awareness in Saskatchewan.

Alberta Provincial Updates

Submitted by Jennifer Holman, VP - West

The year 2014 was a busy one for CTA-Alberta. Since April’s implementation of the Alberta Organ and Tissue Donation Registry, more than 60,000 Albertans have registered their intent to donate on-line at myhealth.alberta.ca and in provincial registry offices. That number continues to grow by approximately 10,000 names each month. We collaborate with the registry associations to get the word out to Albertans about the registry and the important need for donors. We are enhancing our partnerships with other organizations interested in organ and tissue donation and with community and corporate groups including Servus Credit Union, WestJet and Rotary Clubs. Calgary and Edmonton both hosted very successful Transplant Trot events, raising awareness with advertisements, with hundreds of participants and volunteers and by engaging local businesses as race sponsors. Funds raised have supported a number of creative initiatives to further our awareness activities including:

• 4X8 foot signs in more than 20 hockey/sport arenas and at major highway intersections

• “Health Renewed” posters for arenas, libraries, shopping areas

• Bridge banners• Edmonton K-Days Parade entry• Information displays at Farmer’s

Markets, Volunteer and Trade Fairs• Awareness Kits and presentations• Rocky Mountaineer Train of

Heroes sponsorship• Credit card protection sleeves

that include our logo• Edmonton Corporate Challenge

sponsorship

We held an election late in 2014 and we are very pleased to introduce Shauna Rivait, our new Provincial Director. And we are proud to be the first province to formalize a structure for regional groups to function independently in their local areas under the direction of the Provincial

Executive. We expect an exciting year for our Calgary, Edmonton and Lloydminster committees and we look forward to continuing our collaboration with Alberta Health as the provincial Donation Agency begins to take shape over the coming months.

Upcoming 2015 Events

2015 promises to be another active year beginning with our annual Steak Night. This year we are changing things up by holding a rib night at Tomas the Cook Restaurant in Saskatoon on Monday, January 26th. In addition to raffle prizes and a 50/50 draw, we have two donated quilts for a silent auction, and one of our CTA Members and his band to entertain us with their music.

Our largest event of the year, the Saskatoon Transplant Trot, is scheduled for Sunday, May 10th at 10am at Victoria Park in Saskatoon. Transplant recipients as well as organ donors and organ donor families will participate at no cost. A group from Moose Jaw is hosting a second Transplant Trot in Saskatchewan this year. The Moose Jaw event is scheduled for May 31st in the Wakamow Valley.

Other smaller fundraising events that we have discussed at

our recent meetings include hosting an awareness Barbeque at a Sobey’s Store, setting up an awareness booth and 50/50 draw at Adesa Auctions, and perhaps running a second lottery. In addition to fundraising events we hope to plan at least one social event, probably our annual Christmas Social.

Our “One Life Many Gifts” committee will continue to meet as we move forward in our goal to have all students in Saskatchewan exposed to information on organ and tissue donation awareness. We will continue to work closely with the Saskatchewan Transplant Program to promote organ and tissue donation awareness to the general public and to provide Saskatchewan Transplant Recipients with information on the Canadian Transplant Association.

Finally, we continue to seek opportunities to promote our organization and its goals through local media and events.

8 9

Rocky Mountaineer Train For Heroes

Submitted by Margaret Benson, BC Provincial Director and double lung transplant recipient

“Powerful and moving. Our Life Changing Train for Heroes trip aboard the Rocky Mountaineer was pure magic. Meeting other recipients, donor families and a living donor was a beautiful affirmation of the power of organ donation. I actually get goose bumps when I reflect upon our few days together.” Elaine Yong (Mother of heart recipient, Addison and Global news reporter)

“Following the trip, which was easily one of the most touching and inspirational journeys of my lifetime, I was inspired to try and get others in my circle of friends/associates to register to be organ donors. My big takeaway is that EVERY registrant makes a difference” Jeff Pelletier (Rocky Mountaineer Communications Specialist)

The CTA was given an incredible opportunity to be part of the second annual Rocky Mountaineer Train for Heroes. Rocky Mountaineer dedicated the 2014 train to organ and tissue donor heroes in hopes of creating worldwide awareness to encourage everyone to register as organ donors.

In September the Rocky Mountaineer Train for Heroes welcomed twelve organ donor related families. In attendance were 10 donor family members, 9 recipients, 1 living donor and their families. They came from Canada, Australia, USA and the UK to travel from Vancouver to Lake Louise, representing: Transplant Sport (UK), Chris Klug Foundation (USA), Transplant Australia (Australia) and Canadian Transplant Association (Canada). The Life Changing Train for Heroes programme was developed to honour everyday heroes who have made a significant impact on the lives of others, recognize the families who have supported them and raise awareness of the organizations which continue to assist them. Randy Powell, CEO of Rocky Mountaineer said, “We are delighted to show our gratitude to our selected heroes by giving them the opportunity to experience the magic onboard our rail journeys, where they will share time with loved ones over two uninterrupted days through some of the most stunning scenery in the world.”

It was the opportunity of a lifetime and for many it truly was a life-changing journey. As stated in the opening quotes it was an incredible trip, one, none of them will forget.

Donor Family Network Trustees, Nigel and Sue Burton stated “We were overwhelmed to be chosen to represent UK donor families. The trip was amazing. The train journey gave all of the families the opportunity to meet, share their stories, laugh and cry together. We met some wonderful people, saw some fantastic places and were treated like heroes by Rocky

Mountaineer”. Nigel and Sue lost their 16-year-old son, Martin, in 2003. They met their son’s heart recipient Marc, the day before the train trip began. Sue said, “Meeting Marc was such an honour. It comforts me to know that, like us, they think of Martin every day. It was a very emotional moment when we first met and a very special moment when Marc took my hand and placed it over his heart. It is strange to think that Martin’s heart is still beating but we remember him with pride because of that and we wish Marc a long, happy and healthy future.”

Donor families were honored for their courage, spirit in the face of adversity, and commitment to raising awareness for the global need for organ and tissue donation. A series of 4 videos, produced by Rock Mountaineer, vividly illustrates some of the challenges and joys of this complex issue. One video featured a Canadian donor family, the Talbot’s who suffered a tragic loss when their son, Jonathon, was fatally injured in a motor vehicle accident. In that moment, they made a selfless decision that gave life to four others. See their incredible story and watch the Talbot’s experience onboard the train. Learn more about the 2014 heroes at: www.rockymountaineer.com/heroes

Shannon Kidd (Rocky Mountaineer Senior Management Communications director) said, “Rocky Mountain was inspired by and grateful to the CTA for their incredible support of our 2014 Life Changing Train for Heroes. Our Canadian

heroes were each unique and wonderful – the candor and openness with which they shared their stories has truly made an impact. We are incredibly grateful and will remain fans of your organization always.

Our heroes showed us what resilience, positivity and strength truly are. I was personally profoundly impacted by the trip and have made changes as a result of the journey. I feel blessed to have met our Canadian families and experienced this journey alongside such courageous individuals.”

I felt honoured to be part of this amazing journey and to represent not only the Canadian Transplant Association, but also organ donor recipients. The trip reminded me of the transplant games, but on a smaller scale. Fourteen families and their supporters, employees of Rocky Mountaineer and film crews arrived at the Rocky Mountaineer train station unaware of what was to happen in the next few days. Through tears, laughter, hugs and deep conversations, we left the train with a sense of peace, a true feeling of making a difference in other people’s lives and of being one big, happy family. Thank you to all the families, the four representing organizations and to Rocky Mountaineer for making this trip a life-changing journey.

“Following the trip, which was easily one of the most touching and inspirational journeys of my lifetime, I was inspired to try and get others in my circle of friends/associates to register to be organ donors. My big takeaway is that EVERY registrant makes a difference” — Jeff Pelletier, Rocky Mountaineer Communications Specialist

12 13

Kaidyn’s Dream

Submitted by Tammy Blair

On April 24, 2002 in Windsor, Ontario, our first son was born. We named him Kaidyn meaning fighter, not yet knowing that his namesake would stand for everything he was. Kaidyn was born 6lbs 3ozs, perfect yet not healthy. He was born with a liver disease called Biliary Atresia. Biliary Atresia is a congenital absence or closure of the major bile ducts, the ducts that drain bile from the liver.

Most people dream of what their baby would someday become but our dreams were much different. We dreamt that he would live. That someone in their time of sorrow would be generous and kind. That a perfect stranger would give our child the only thing we couldn’t… the gift of life.

At 3 months old Kaidyn had exploratory surgery in hopes of performing a procedure to bypass blocked liver ducts to prevent liver damage, but this could not be performed as cirrhosis had set in. Subsequently, Kaidyn was listed for transplant. We watched and waited knowing that soon Kaidyn would become very ill. Our son deteriorated into a frail 13lb 1 year old before our eyes, fighting to live.

On April 26 2003, we received the call that changed our lives. A hero said “yes”. Kaidyn received his

miracle, his gift of life – a new liver. We will forever be grateful to the family that chose to give our son a second chance. I will never forget the first time Kaidyn opened his eyes after transplant; they were so sparkling white, breathtaking.

Since his transplant, Kaidyn has soared. He has this over abundant zest for life and excels at sports. Kaidyn has competed at 4 Canadian Transplant Games (Windsor, Quebec City, Calgary, and Moncton) and at the World Games in Durban, South

Africa bringing home many medals and establishing world records in ball throw and long jump. Kaidyn was awarded the Ontario Youth Award in Memory of Thomas Quinet in 2013 and went on to win the National Youth Award in Moncton. He was also very honoured to receive the “Outstanding Youth Athlete Award” in South Africa for his accomplishments at the games. Kaidyn is the first Canadian to bring home this special award. He is always striving and accomplishing more, proving that

you can not only be healthy and active after transplant but can surpass all expectations.

Kaidyn is active in organ donation awareness. He shares his story locally and through social media (see YouTube video: Kaidyn’s Dream). Kaidyn has accomplished so much in his short life. In the two years since Kaidyn began speaking, Essex, Ontario, our home town increased over 11% in registered donors. I am so proud to listen as he commands his audience’s attention and shares his story while promoting organ donation. Always starting his speech the same; “I have a dream that no child, mother, father or loved one will ever have to die waiting for a lifesaving transplant.” It is beyond rewarding, it is a privilege to watch as he impacts those around him. Kaidyn is a leader, athlete, ambassador for organ donation, but above all, our hero.

Tribute to my Kidney Transplant Surgeon – Dr. William Lakey

Submitted by Kathy Tachynski, Kidney Transplant Recipient (August, 1991)

The kidney and greater organ transplant community lost a great champion the day Dr. William (Bill) Lakey passed away. I was honored to have been asked to speak at Dr. Lakey’s funeral service and CTA was one of his chosen charitable organizations for memorial donations because he truly believed in organ donation awareness.

Dr. Lakey changed the lives of countless Albertans, including my own, I will forever be grateful to him for his part in making my gift of life a reality. My special connection with Dr. Lakey began just over 23 years ago. After 6 ½ years on dialysis, I received the gift of life through organ donation. I was blessed to have an extraordinarily-talented surgeon lead a team through my life-changing kidney transplant.

The first memory I can still recall so vividly, is resting in my hospital room post-transplant. Dr. Lakey stopped in to ask how I was feeling and to check and see how my new kidney was doing. He was so calm, soft-spoken and had such a gentle nature about him. From that moment, I could tell what a genuinely caring and compassionate doctor he was. It was a simple gesture he made, stopping by each day of my 10-day hospitalization, but that simple gesture brought the world of comfort to me and my family, knowing I was in such good hands.

The first Christmas following my transplant, I wrote a Christmas card to Dr. Lakey to thank him for what he had done for me and making that first Christmas with my new kidney the best gift I could have ever received. I was pleasantly surprised to receive a Christmas card in the mail a short time later signed Bill and Shirley. For years afterwards, we would exchange Christmas cards and I’d keep them posted on what my kidney transplant had enabled me to do and see in life. I would learn about their travels and/or Christmas plans with their children and grandchildren who they cherished. The love of family was so very clear in their cards, which was heartwarming. It again reiterated how genuine a person Dr. Lakey really was — not only as a professional, but as a loving husband, father and grandfather.

While attending university, I would walk over to the hospital for bloodwork or appointments and from time to time would have the pleasure of bumping into Dr. Lakey

— his warm smile and caring ways remained constant. He always took an interest to see how I was doing too which meant so much to me. I was always pleased to be able to let him know how many years (and months) it had been since my kidney transplant, which always made him smile.

The gift of life I received through organ donation and Dr. Lakey’s talents in transplantation inspired me to do more in promoting organ donation awareness so that others could have a chance like I did. He performed the first kidney transplant in Western Canada in 1967, and with over 2600 kidney transplants done to date in the Renal Transplant Program at the University of Alberta Hospital in Edmonton, Dr. Lakey’s dedication, compassion and caring for patients continues.

Shortly after my transplant, I became involved with the Canadian Transplant Association and when we eventually hosted the Canadian Transplant Games in Edmonton in 2006, I was touched to see Dr. Lakey attend the opening ceremonies. It was a proud moment and joyous reunion as I introduced him to many people that day, and for my family to see him again after so many years.

I shared Dr. Lakey’s picture with a friend who had never seen or met him before. He replied back saying “his face shows goodness”. It was such a simple statement, but embodied so much of Dr. Lakey and all that he did in his life, and all that he stood for as a human being.

I am thankful for Dr. Lakey being a special person and having a positive impact in my life. May you rest in peace and know your goodness, compassion and caring ways, and warm smile will forever be remembered. You will always be a special part of my life and my family’s for the gift of life you made reality through kidney transplantation.

On April 26 2003, we received the call that changed our lives. A hero said “yes”. Kaidyn received his miracle, his gift of life – a new liver. We will forever be grateful to the family that chose to give our son a second chance. I will never forget the first time Kaidyn opened his eyes after transplant; they were so sparkling white, breathtaking.

“I can accept failure, but I can’t accept not trying” — Kaidyn’s favourite quote

14 15

The Marilyn Denis show celebrates Everyday Heroes

Submitted by Joanna Mitchell

On December 15, 2014 I was invited to speak at our local YMCA about my daughter Ryley’s heart transplant story. At the YMCA I was asked to wait until the group was ready for me. Once they were, my sister, who accompanied me, and I walked up the stairs but instead of speaking about organ donation awareness, I was faced with a camera crew, my husband, grandma, and members of the YMCA. The speaking engagement was a ruse to ambush me for a makeover on The Marilyn Denis Show on CTV. My wonderful grandma emailed the show explaining the volunteer work I do raising awareness for organ donation. I was chosen as an Everyday Hero and given a makeover on the show. My husband, Jeff, who I would not be able to do all of my volunteer work without, orchestrated the ambush.

That afternoon, the camera crew came to our home and filmed us talking about our organ donation story. Two days later, I left for Toronto for three days. The first day was spent shopping at Bayview Village mall for my new outfit along with two other amazing ladies that were also chosen for the show. Shannon, from Edmonton, had fostered over 72 children and Cyndi, from Ontario, was a quadruple amputee. These were truly inspiring women and I feel blessed to have had this opportunity to meet them and hear their stories!

After many hours of filming and shopping, we returned to our hotel and I enjoyed a wonderful night with a view of the CN tower changing

colours from my window. Thursday morning I was able to order room service breakfast for the first time in my life. That afternoon we took “before” photos, followed by a hair consultation at the famous Civello Salon. That evening, my husband Jeff joined me and we enjoyed a lovely dinner out with no children!

Early Friday morning we went to the studio, the first part was spent trying on the outfits that had been chosen for us, rehearsing for the show and preparing for hair and makeup. Then the show went live and the Canadian audience got to meet our family and hear transplant Ryley’s story. After the “before” segment, it was whirlwind of hair, makeup and putting on the makeover outfits. Before we knew it, we were walking out for the “after”

reveal. As if a makeover, two nights at a luxurious hotel and a few days away from the kids wasn’t enough, there was a big surprise at the end. We also received the many gifts that were given out during The Marilyn Denis Show holiday giveaways.

I feel so honoured to have been chosen for this experience. There are so many volunteers that work so hard and deserve it just as much. The makeover and gifts were fun, but the best part was having organ donation brought to the forefront across Canada. And really, I am not the hero, it is the donor families, like the one that saved the life of my daughter Ryley that are heroes. We hope that by sharing Ryley’s story, we can encourage others to register as organ donors, talk about their wishes and in turn, more lives will be saved.

Chaussez-vous pour le foie Lace up for live 2014

Submitted by Lyne Pelletier

Quand j’ai vu l’annonce de l’événement «Chaussez-vous pour le foie» dans le bulletin d’information de la Fondation canadienne pour le foie, je me suis dit que c’était justement le projet qui me manquait et qui me sortirait d’une année difficile. Les décès rapprochés de mes parents ces deux dernières années m’ont beaucoup affectée, j’ai parfois eu l’impression qu’une partie de moi était morte avec eux! Je me suis donc inscrite et ainsi engagée à lever des fonds pour la Fondation en échange d’une participation au Reggae Marathon à Negril en Jamaïque.

Pour réaliser mon projet, j’ai fait appel à mon entourage tant pour récolter des dons que pour me construire un programme d’entraînement qui me permettrait de courir 10km. Ces deux volets de mon projet se sont si bien déroulés que le 5 décembre je me suis retrouvée sur un vol en direction de la Jamaïque!

La course a eu lieu tôt le samedi matin. En fait, pour éviter que les participants ne souffrent de la chaleur, le départ est donné à 5h15, il fait toujours nuit. Une foule d’environ 1000 coureurs qui s’activent en même temps, c’est très impressionnant. Il y a en a qui ont de l’expérience et qui feront la plus longue distance 42km, je les admire. Personnellement, comme c’est ma première participation à ce genre d’événement, j’ai choisi le 10km. Dès le début de la course, je cherche à accorder mon rythme à celui d’un autre coureur devant moi pour qu’il m’entraîne dans son sillage. C’est un truc que m’a donné une amie et ça marche. Je termine la

course près d’une Allemande avec qui j’ai échangé quelques mots entre deux points d’eau. Quand je croise le fil d’arrivée, le soleil se lève sur l’océan et j’ai le sentiment d’avoir accompli de belles choses.

L’atmosphère ressemble à celle des Jeux mondiaux des greffés, des gens de partout dans le monde qui partagent la

même passion pour la course. Il n’y a pas de cause commune, chacun court pour ce en quoi il croit! L’organisation est parfaite, les participants sont logés dans des hôtels avec forfaits tout inclus. Des activités sont organisées et tous les participants finissent par sympathiser, se comprendre et apprécier le bonheur de vivre.

Un peu avant le départ avec Betty Esperanza de la Fondation canadienne du foie.

Ma médaille de participation

16 17

Heart Recipients Meet doing a Commercial for The Heart & Stroke Foundation

Submitted by Scott Ouellette & Dave Allingham

Scott Ouellette received a heart transplant in August 2008 after heart attack at age 28. He married Amy on his 1 year anniversary of his transplant. Scott has competed in the 2011 World Transplant Games in Sweden and won 3 gold 1 bronze at the 2012 Canadian Transplant Games in Calgary. Scott is an avid golfer and was the winner of 2013 Alberta Mid Handicap golf championship. Scott has done numerous talks for medical staff, donor families, and others. He was honoured to be asked to be in the Heart & Stoke Lottery Commercial.

It was a unbelievable experience to work on a real commercial. Not only

getting to be in the commercial but getting to do it with my wife made the experience that much better. I have a better appreciation for the work that goes into a commercial. Meeting Dave was a great treat. It is always great to meet another person who knows what you’ve been through. The biggest thrill was getting the messages and emails after friends and family seen it on TV.

“I love to challenge myself through sport. I never thought that my heart would stop me in my tracks. Who knew that after all those years of being a super fit guy that I would be diagnosed with a life-threatening heart arrhythmia. I cannot say enough about

the good work the Heart and Stroke Foundation does. The research they funded at Toronto General Hospital changed the direction of my life, and that of my family. I am just so happy I am here and able to be active and cycle with my amazing kids” — Dave Allingham

CTA National Treasurers Report

Submitted by Michael Sullivan, CTA National Treasurer

Since assuming the position of National Treasurer there have been some changes that have taken place, some will be obvious to our members and others will not.

First let’s talk about the obvious changes. The Board decided to implement a two year membership fee replacing the annual fee, which was presented at the AGM. It was noted that the year of the transplant games membership increased due to our members participating in the games. This left a financial void in the off years where in fact memberships were lower causing a shortfall in revenue. It is important to note that although we are changing to a two year membership format, the rates remained the same and we continue to offer a lifetime membership at $300.

The Board also approved the printing of the Living Proof annually. Providing members a hard copy and also to be available and distributed to local hospitals and clinics.

I believe our most exciting change this year is the new process put in place in regards to the Provinces collecting donations at fundraising events. Each Provincial Director

now has the ability to issue receipts to a financial donor on the spot. If you are hosting a Transplant Trot or any other CTA related event, official receipts can now be issued directly.

A budget for 2014-2015 has been proposed to the Board of Directors for approval. The budget will be made available to all Provincial Director’s and they will arrange to forward a copy should any members request it. Presented is a balance sheet for the fiscal year ending October 31, 2014, a provincial breakdown is also available upon request.

Balance Sheet (as of October 31, 2014)

Current Assets Total 2014 Total 2013

Cash $653,283 $576,183

GIC 2,566 –

Inventory 3,225 –

GST/HST Receivable 16,613 –

Unrestricted Surplus $675,687 $576,183

Part of a Team

Submitted by Heather Hockley

Wow do I ever feel lucky I have some amazing team members! After being on dialysis for 3 years I was surprised to receive the call that would forever change my life.

I was at work when I received the call that a donor kidney was found for me, it was a call that everyone waiting for a transplant can understand. I didn’t know whether to cry or shout for joy as I knew the only way I was getting a transplant was if someone else had passed away. Within hours I was on my way from my home in Cranbrook to Vancouver where I would live for the next 2

months as doctors monitored my lab work and ensure my new kidney was working fine.

My team of doctors and nurses made me feel comfortable in a city where I knew no one yet never felt alone. My family, partner and two boys were a great team of supporters calling me faithfully and coming to visit when they could. I felt great, I was able to do things that I couldn’t do before my transplant. I had energy to walk, golf, swim and just get out and enjoy all my new life had to offer me.

During my first little while back home I had to make numerous trips

to Trail to see my Nephrologist and team of specialists. Dr. Zhang would come in during the appointment and diligently go over the results making sure everything was good. It is these professionals that kept me going through my dialysis, they were there in the beginning and they continue to be there for me today.

You know who I am talking about, the nurse that checks your vitals, and calls to see how you are doing, in my case this is Teresa. The dietitian, who tried to get me to eat more bananas, I kept telling her the only way I was going to eat more bananas was with ice cream and chocolate sauce. Cindy would just shake her head and follow up on the next appointment. And then there is Connie, my social worker and friend, she was there to listen and offer suggestions and when I hosted my first Kidney Foundation Golf tournament she was there to partake even though she was not an avid golfer.

In 2012 I travelled to Calgary for my first Transplant Games and met a wonderful new group of friends and am a proud member of Team B.C., you guys are awesome! The 2014 Transplant games at Moncton were amazing, I really connected with more athletes and supporters and boy do those Maritimers know how to throw a party. My sister travelled with me to Moncton for encouragement and support she is a great cheerleader and really enjoyed the camaraderie the games had to offer. I strive every day to do the very best I can in memory of my Donor and with help from my “Team Members” I continue to be the very best I can.

Left to right: Connie, Heather, Teresa, Cindy, the Transplant Clinic Team in Trail B.C.

18 19

Addison’s Story

Submitted by Elaine Yong

My very first Mother’s Day was just days away and I wasn’t even sure I’d have any reason to celebrate. My newborn daughter Addison was in the ICU at BC Children’s Hospital struggling for every beat of her tiny heart. We had already been told the grim news – her only chance for survival was a heart transplant. Try digesting that shocking conversation, especially as first-time parents already reeling from our baby’s sudden heart failure and ensuing diagnosis of a rare congenital heart defect.

Just three weeks prior, we had been sent home from the hospital with a perfectly healthy child after a perfectly normal pregnancy. Now we had a baby who was being kept alive by a heart-lung machine and waging a full-out war against time. It was terrifying and surreal. I knew the odds were not in our favour. The wait list for organs in BC was especially dismal and Addison’s condition was so precarious it was an hour-by-hour situation.

On Monday morning, we were walking around the shopping mall. Eight hours later, we were at the ER at BC Children’s Hospital. By midnight, Addison’s heart was in failure. On Wednesday the doctors told us her only hope

was a new heart. She got listed for transplant on Thursday. Our medical team started making plans to get Addison stable enough for surgery to implant a Berlin Heart – a mechanical heart pump that would hopefully keep her alive long enough for the wait. They told us to prepare for up to a year, or even longer.

Then on Saturday, the day before Mother’s Day and five days after our arrival in the ER, our surgeon called us in the ICU. He wanted to speak to me so my husband Aaron handed the phone over. “I have a Mother’s Day present for you,” said Dr. Sanjiv Gandhi. I kind of scoffed thinking to myself, “What? Did our surgeon buy me chocolates or flowers?”

“I have a new heart for you.” Those magic words that changed everything. I couldn’t even process it and I just started shaking and repeating, “Are you sure? Is this a joke?”

Late that evening, we kissed our baby girl good-bye as she was wheeled into the operating room. We were so scared yet so hopeful. This was her chance. She had already showed us she was a fighter and she wasn’t ready to give up.

On Mother’s Day, Addison got her new heart. Of course the story never ends there. Transplant is not a cure. It’s simply exchanging one deadly condition with another chronic condition that is more easily managed. Addison has had her share of ups and downs on this transplant rollercoaster ride. Before she even left the OR, her new heart stopped working, also known as primary graft failure. Many patients don’t survive this devastating setback. She had to go back on ECMO in the hopes her new heart just needed a rest. Amazingly that’s just what happened. We took her home from the hospital three weeks later. Addison has also dealt with some nasty infections that sent us back to the hospital - one round of pneumocystis pneumonia and another of rotavirus. Plus the usual crazy schedule of blood work, appointments, ECHOs, ECGs, physiotherapy, scans and tests means we have spent far too many hours at our ‘second home’.

“I have a new heart for you.” Those magic words that changed everything. I couldn’t even process it and I just started shaking and repeating, “Are you sure? Is this a joke?”

But there is so much we have learned along this journey. Not only have we grown stronger together, we have such deep appreciation for the time we do have with Addison. She has taught us to revel in the moment. Sometimes the simplest things bring the greatest joy – the way she giggles when you tickle her, or when she has a secret to whisper in your ear. We have also found a new passion, dedicating our spare time to raising awareness about organ donation through groups such as the Canadian Transplant Association and fundraising for transplant research. Along the way, we have met so many wonderful recipients, donors, doctors, nurses and researchers. And we have made deep and meaningful friendships, which ease the burden of this “new normal”.

Addison truly embraces life. She wants to try everything and loves to take on new challenges. Ballet, tennis, skating, Chinese and swimming are her current interests. She wants to take skiing lessons too. Last year at the age of three she learned how to ride a pedal bike. She has no fear! Our recent trip to Disneyland in Hong Kong included a spin around the Space Mountain rollercoaster. I screamed the loudest.

We live by the philosophy another 25+ year heart transplant recipient wisely shared with us – go and live the life you were supposed to live. For Aaron and I, we live to travel and now we’ve introduced Addison to our world. So far, her passport stamps include Italy, France, Australia, Thailand, Philippines, and Hong Kong. And this year, she’ll get a new one when we go to the World Transplant Games in Argentina. During her recovery from the

transplant surgery, I heard about the WTG and saw there was a Juniors category. I dared to dream of one day sitting on the sidelines cheering on my daughter as she competed. And now we’re almost there.

Every day we think of Audrey, the beautiful little girl who has made all of this possible. She was only 17 days old when her mom Felicia had to come to terms with the worst news a parent can ever face. Yet Felicia didn’t hesitate. She immediately said yes to organ donation, believing that saving lives was the reason Audrey had been born. We are so incredibly grateful.

Follow Addison’s story: addisonmcarthur.wordpress.com

Toronto to Host the Next Canadian Transplant Games in 2016

Toronto has been selected as the next City to host the Canadian Transplant Games. These Games will be the 8th National Transplant Games hosted by the Canadian Transplant Association.

Vision for the 2016 Games

Ultimate “Celebration of Life” experience for all particants, including organ recipients, living donors, donor famiies, their supporters, volunteers and the general public.

Games’ effect: helping to raise registered organ and tissue doantion rates in Ontario by 500,000 people prior to the start of the 2016 Games and a further 500,000 by the end of 2018.

Hosting profitable games which assists in funding many more awareness activities and events. Toronto: More than just a place to go because you are sick.

Please refer to our website at www.canadiantransplant.com or email Sandra Holdsworth, Provincial Director at ctaontairo@bell.net for information. See you in Toronto.

SAVE THE DATEThe Canadian Transplant Games will be held August 8 –13, 2016 in Toronto, Ontario.

For Supporting the Canadian Transplant Association

Become a member today and support our initiatives. If you are a recent transplant recipient, you’re eligible for a complimentary

one-year membership! See our website for more information.

BECOME AN ORGAN & TISSUE DONORcanadiantransplant.com

Canadian Transplant Associationc/o N. Folkins11649 St. Albert Trail NWEdmonton, AB T5M 3L6