Spring 2016 Volume 14
CELEBR ATE The Gift of Life
Nazdana’s Transplant Journey
N
Nazdana in hospital for liver transplant.
WHAT’S INSIDE Message from the CEO . . . . . . . . . .
1 2 3
Message from the SVP, Fund Development . . . . . . . . . . .
4
Message from the Director of Family & Community Relations . .
5
Providing Support to Families from Coast to Coast . . . . . . . . . . .
6
Organ & Tissue Donor Awareness Month . . . . . . . . . . . .
9
Nazdana’s Transplant Journey . . . . Message from the Chairman . . . . .
Stories to Touch Your Heart . . . . . . 10 Spring Cleaning with a Cause . . . . 11 Thanks to our Life Legacy Members and National Partners . . . . . . . . 11
2016 Winnipeg Miracle Gala & Concert . . . . . . 12 Follow us on:
azdana Jan was born in Portage La Prairie, Manitoba on August 10, 2012. Father, Jouhar Ali, and mother, Alia Jouhar, who had recently immigrated from Pakistan earlier in the year were excited to add a second beautiful daughter to their family. Baby Nazdana was discharged from the hospital after what seemed to be a normal and healthy delivery. In the early morning hours of August 13, Alia noticed that Nazdana seemed to be lethargic, and became concerned when they were not able to wake her easily. Nazdana was quickly admitted to Portage District General Hospital where Liver transplant recipient, Nazdana Jan. her conditioned deteriorated even more leaving her in a coma. After hours of trying to stabilize Nazdana, she was transferred to Winnipeg Health Science Centre where the test results came back indicating that Nazdana’s ammonia levels were 1,600 micrograms per decilitre, 10 times the normal level of a newborn which is between 90 to 150 micrograms per decilitre. Nazdana was diagnosed with urea cycle disorder, a genetic disorder caused by a deficiency of one of the enzymes in the urea cycle which is responsible for removing ammonia from the blood stream. continued on page 8
Message from the Chairman
W
hen I started the David Foster Foundation many years ago I could never imagine that it would become what it is today. We are fast approaching our 30 year anniversary in 2017 and I remain committed to leaving a life legacy that ensures our work can continue well into the future. I am so grateful to have been able to help over 1,000 families and want to make sure that we reach our 30-million-dollar goal by 2017 as it will provide muchneeded financial support for families for years to come. It is hard to believe that a simple phone call from my mother nearly 30 years ago would have such a profound impact on my life and, more importantly, in the lives of so many children and their families.
“I am so grateful to have been able to help over 1,000 families and want to make sure that we reach our 30-million-dollar goal by 2017 as it will provide much-needed financial support for families for years to come.� Please join me in telling your friends and family of the importance of becoming a registered organ donor. One day someone you love may need a transplant, or someone you may never know may give you the gift of life. Sincerely,
David Foster, Founder and Chairman
The medical staff and social workers do so much for our families and their tireless commitment and dedication to saving children’s lives and creating a better quality of life for the families is so inspiring. Every time I get to meet one of our children, I am blown away by their courage in the face of such extreme adversity; children like Curtis Keller who had a heart transplant when he was five years old. Before his transplant, he battled on with only a small fraction of his heart left functioning with the help of the LVAD put in place. Children like Evanne Fisher who had two heart transplants before she was eight years old, spending more time in hospital than out during the first eight years of her life. Sadly, these stories are not unique amongst the families that our Foundation supports, and it continually reminds me of why it is so important to keep fighting the fight and striving to create change in our organ donor system in Canada. David with the Dickson family at the 2015 Toronto Miracle Gala & Concert.
2
Spring 2016
www.davidfosterfoundation.com
Message from the CEO
A
s the weather starts to get warmer and the days start to get longer, it is a good time to look ahead and also count the blessings that have brought us to this point! 2015 was a big year for us at the David Foster Foundation and as always we are so thankful for all our supporters who make our work possible. In our almost 29 years, we have helped over 1,000 families and provided millions of dollars in direct financial support—a feat we simply could not have accomplished without a great deal of help! Our continuing partnerships with our Life Legacy Members and our National Partners have been remarkable and we are so thankful for their generosity.
In Canada, support for organ donation is overwhelmingly positive, but only a fraction of those who support it are registered donors themselves. Thousands of people across the country are currently waiting for an organ transplant, and registering is simple and takes less than five minutes. You can help change the statistics by involving your friends and family, your business community, school or even by pledging financially. Go to davidfosterfoundation.com for details on organ donation and how you too can make a difference. We are so grateful for the ongoing support from our partners, sponsors, volunteers, and the communities all across North America. We all share one common goal: making a difference in the lives of transplant families.
I am looking forward to our upcoming 2016 Miracle Gala & Concert this September in Winnipeg, Manitoba presented by National Bank Wealth Management and in partnership with WestJet. One of our biggest goals is to raise awareness and increase the number of organ donors registered in Manitoba. Currently, out of a population of 1.2 million, less than 15,000 people are registered organ donors. We hope to inspire the residents of Manitoba to take five minutes and register with their provincial registry and to tell their loved ones their wishes.
“Thousands of people across the country are currently waiting for an organ transplant, and registering is simple and takes less than five minutes. You can help change the statistics by involving your friends and family, your business community, school or even by pledging financially. Go to davidfosterfoundation.com for details on organ donation.�
With gratitude and appreciation,
Mike Ravenhill, Chief Executive Officer
Lara Knudsen, Jouhar Ali, John Danson, Mike Ravenhill, and Alia Jouhar with liver transplant recipient, Nazdana Jan, and her sister, Paghunda.
David Foster Foundation Newsletter
3
Message from the SVP, Fund Development Is the past relevant to the present?
A
little history on me–my mother was a World War II war bride. My parents met in London, England in the early forties, while my father was recovering from a serious war injury. Directly after the war, my parents returned to Canada and shortly thereafter, voila, four boys! From my father I learned that fighting for your country is an incredible sacrifice and a definitive gift to your fellow Canadians. My father went to war with his four best friends and only my father came home, although did so, less the sight in one eye. Certainly a defining moment for my father in regards to appreciating the value of life and the importance of giving back. After spending close to 30 years in business, my father felt compelled to continue in the area of giving back through his tenure as a Federal Member of Parliament and Minister of Defense during the Trudeau (Pierre) era. Our current Prime Minister, Justin Trudeau, was a youngster at the time. My family quickly realized that giving back was part of our family’s DNA. In the early seventies, I got married, it will be 45 years in May, and quickly learned of the importance of sharing, giving, compromise and most importantly, love. In the early eighties, I was blessed with two lovely daughters and from them, as all of you with children can attest, couldn’t imagine my life without them. Over the past decade, my two daughters got married and today we have three healthy grandchildren. Special is an understatement. Like many of you, I would do anything to ensure they grow up as happy, healthy, and accomplished in whatever they may choose to do–ideally, with a DNA of giving that they received through their great grandparents, my mom and dad, my wife and I, and of course their own parents. From my children and grandchildren, I learned the importance of keeping the family “whole”. The lineage is the game changer.
4
Spring 2016
“the number of pediatric life-saving transplant procedures will increase significantly over the next few years and as a result, the number of families going through the life-saving transplant process and requiring financial support directly from the Foundation will also increase.” What is your DNA in regards to your fundamental and distinctive characteristics when it comes to family and giving? With the onset of new technology in the area of pediatric life-saving organ transplants and concurrently, with the increase of organ donor registrations, the number of pediatric life-saving transplant procedures will increase significantly over the next few years. As a result, the number of families going through the life-saving transplant process and requiring financial support directly from the Foundation will also increase. The David Foster Foundation is the only organization in Canada providing this incredibly important financial support to families. Through your generous support, no matter the amount, together let’s make more tomorrows for children.
Sincerely,
John Danson, Senior Vice President, Fund Development
How to make a donation to the Foundation: 1. Mail your cheques to David Foster Foundation, 212 Henry Street, Victoria BC V9A 3H9 2. Credit card–call our Victoria office using our toll free number @ 1-877-777-7675 3. Online at www.davidfosterfoundation.com
www.davidfosterfoundation.com
Message from the Director of Family & Community Relations
I
am truly inspired by the families who have a loved one going through the organ transplant process. I am also inspired by the communities who stand behind these families and support one another on an ongoing basis by sharing in the journeys, joys, frustrations and worries. I have witnessed on many occasions the words of encouragement and compassion the community has for one another. Their support for ongoing education about the importance of being a registered organ donor and getting the message out in the effort to help save lives inspires me every day. I am so proud to witness the communities that band together and empathetically support families so they can be by their child’s side though medical appointments and hospitalizations. I have had the pleasure of working with many of the transplant organizations across Canada and getting to know the incredible passionate people behind them. It has been fantastic to be able to work together for such an important and incredible cause, and I continue to look forward to the day that the waiting lists for transplants are eliminated. We have many wonderful projects and initiatives that we are working on as we near the celebration of the
“It has been fantastic to be able to work together for such an important and incredible cause, and I continue to look forward to the day that the waiting lists for transplants are eliminated.” 30th anniversary of the David Foster Foundation. Over the years, the David Foster Foundation has shared incredible family stories of children saved by the gift of life through organ transplant. We would really love to hear from the children who are now adults because they were given the second chance at life and find out where they are now. If you know a family, or someone that was helped by the David Foster Foundation and would like to participate, please have them contact the Foundation by email at families@davidfosterfoundation.com.
Sincerely,
Lara Knudsen, Director of Family & Community Relations
30 Years
of keeping Families together – Where are you now? If you were one of the 1,000 Canadian families over the past 29 years that received assistance through the generous support of the David Foster Foundation, we would like to hear from you. If you are interested in sharing your story please contact: families@davidfosterfoundation.com Lara with Paghunda and liver transplant recipient, Nazdana, in Winnipeg.
David Foster Foundation Newsletter
5
Providing Much-needed Financial Support FACT: In 2014, more than 4,500 Canadians were waiting for a transplant and 278 died while waiting. Source: Canadian Institute for Health Information
Prince George, BC Logan, 2 yrs heart transplant
Edmonton, AB Lily, 3 yrs liver transplant
Odessa, SK Zoey, 3 yrs liver transplant
YUKON
Winnipeg, MB Piper, 12 yrs liver transplant
NORTHWEST TERRITORY
NUNAVUT
BRITISH COLUMBIA
Cowichan Valley, BC Naomi, 18 mos liver transplant
Prince George
ALBERTA SASKATCHEWAN
Cowichan Valley Abbotsford
Edmonton Calgary
Victoria
Victoria, BC Evanne, 11 yrs 2 heart transplants
6
Spring 2016
MANITOBA
Winnipeg
Abbotsford, BC Cody, 16 yrs, waiting for a heart transplant
Calgary, AB Curtis, 6 yrs heart transplant
www.davidfosterfoundation.com
Winnipeg, MB Nazdana, 3.5 yrs liver transplant
to Families from Coast to Coast
Kingston, ON Ella-Marie, 10 mos liver transplant
Ottawa, ON Eric, 14 yrs, waiting for a lung transplant
Kingston, ON Jack, 10 yrs liver transplant
NEWFOUNDLAND Hamilton, ON Logan, 9 yrs & sister, Alyson, 5 yrs liver transplants
Brossarad, QC Henry, 2 yrs liver transplant
Gander QUEBEC
Williamsberg
ONTARIO
NEW BRUNSWICK Brossarad St-Denis-deBrompton
PEI Penniac
Penniac, NB Macy, 5 yrs liver transplant
Kingston
FACT: Thirty-nine David Foster Foundation kids received life-saving transplants in 2015.
Williamsberg, NB Alyssa, 15 yrs heart transplant
NOVA SCOTIA
Ottawa Hamilton
Gander, NFL Shelby, 22 mos liver transplant
St-Denis-de-Brompton, QC Elissa, 5 yrs heart transplant David Foster Foundation Newsletter
7
continued from page 1 Untreated, the high amounts of ammonia can cause brain damage, coma, and eventually death. Jouhar and Alia were heartbroken to learn their daughter’s condition was life-threatening, and the only chance of survival was a life-saving liver transplant. At the time, Nazdana was too small to receive a liver transplant and the doctors looked for other alternatives to keep her ammonia levels down. Unfortunately, due to Nazdana’s medical conditions, parents Jouhar and Alia had to relocate to Winnipeg to be close to the Health Sciences Centre for medical care. In the search for treatment, the doctors in Winnipeg consulted with doctors at Alberta Children’s Hospital. It was decided the best choice for Nazdana was to attempt an experimental liver cell transplant to stabilize her ammonia levels until she was big enough for a liver transplant. Jouhar and Alia took their family and boarded a plane in the first of many efforts to save their daughter’s life. After admission to Alberta Children’s Hospital, Nazdana received a liver cell transplant. The ten-week newborn made history by becoming the youngest of 21 people around the world to receive the treatment, and the first Canadian. The family remained in Calgary for several weeks to attend daily follow up medical appointments. Each month, the family was required to travel back to Alberta Children’s Hospital in Calgary to closely monitor Nazdana’s ammonia levels. Each time the family travelled for medical appointments, father Jouhar had to take unpaid time off work. After 18 long months, the family received the devastating news that Nazdana’s ammonia levels were beginning to rise again and she would need to be assessed for transplant. With no pediatric transplant program for liver in Manitoba, the family was required to travel out of province. This time the family travelled to Toronto to be assessed by the Toronto SickKids Transplant medical team, and in January 2014, Nazdana was officially listed for a liver transplant. The family returned home to Winnipeg where they family anxiously waited for a liver donor to save their daughter. For three months, Jouhar and Alia checked their phone continually making sure they did not miss the call they so desperately needed to save their daughter’s life. On April 22 at 5:00am, the phone rang waking Jouhar with the call they had been waiting for. The family was
8
Spring 2016
Nazdana in ICU after life-saving liver transplant surgery.
airlifted within a few hours and taken to Toronto SickKids Hospital where Nazdana underwent a liver transplant. After 12 painstaking hours, the doctor appeared with the news the transplant was successful. The dedicated transplant social worker contacted the David Foster Foundation with news that Nazdana was undergoing her liver transplant. They worked tirelessly to get the necessary funding to support the family and cover their accommodation, meals, and transportation. The family’s joy was short lived when Nazdana began to have complications after the transplant and required another surgery, leaving her life on the line once again. The David Foster Foundation’s ongoing support gave the family the ability to be together. The family’s sole focus was on Nazdana while she remained in the ICU. Throughout Nazdana’s recovery, there were many readmissions to the hospital and follow-up medical appointments. Although, the province of Manitoba reimbursed the family for flights, the family still carried the burden of covering the additional costs on top of their normal living expenses. Unfortunately, their story is like so many others struggling with balancing a sick child and day to day life. This is the reason David Foster started the David Foster Foundation 29 years ago–for families like Nazdana’s to always have a place to turn. Today Nazdana is three and a half years old and back home with her sister and parents in Winnipeg. The family continues to attend ongoing transplant follow up and medical appointments to maintain Nazdana’s health.
www.davidfosterfoundation.com
Organ Donor & Tissue Awareness Month did you know: • An estimated 4,500 Canadians are waiting for a life-saving organ transplant. • Majority of religions support and encourage organ donation. • You can register as an organ donor at any age! Canada’s oldest organ donor was 93. • Even if you are a registered organ donor, your family has the final say to whether your organs will be used. We encourage everyone to inform their loved ones of their decision to be an organ donor. • A doctor’s first priority is always to save your life. To be determined if one is an organ donor candidate, two doctors will evaluate the circumstances. • Severity of illness, time spent waiting, blood type, and match potential are all factors that determine your place on the transplant wait list. An individual’s social status, income, or race are never taken into account of the allocation process. • You are five to six times more likely to require an organ to be donated to you than you are to become a donor for someone else.
Luca, liver transplant recipient Steven, Tamara, double heart transplant recipient Evanne, Lia, Jim and Roberto.
P
lease, please, please–let your family and friends know about your organ donor wishes! I have been involved with this wonderful Foundation and the families they support for almost 25 years. I am now very excited about getting involved in helping them promote the importance of organ donor awareness across Canada. The need for organ and tissue donors is increasing every year as people are living healthier and therefore longer lives. Unfortunately, the percentage of people who are donors has increased very little in the last quarter century–and changing this will be an increased focus for the David Foster Foundation.
I have spent the last few months intensely studying and researching organ donation around the world and have concluded that there is nothing more important that we can do as individuals then to ensure that our families and friends know what our intentions are regarding organ donation. So PLEASE, let them know today. Thank you.
Want to be a part of this year’s Canadian Transplant Games in Toronto? For information, registration, volunteer opportunities and sponsorship visit games.canadiantransplant.com!
Sincerely,
Jim Reger, Past President
To donate to the David Foster Foundation and support children and their families receiving life-saving organ transplants, please visit www.davidfosterfoundation.com or mail in your donation directly to:
David Foster Foundation, 212 Henry Street, Victoria, BC V9A 3H9 CANADA David Foster Foundation Newsletter
9
Stories to Touch Your Heart ella-marie
E
lla-Maire was welcomed into this world on June 8, 2015. At six weeks old the slight yellow tinge in her eyes had become more apparent. The family was informed that the yellowing was not common neonatal jaundice, and after several days of tests, three hours in surgery, and a cholangiogram, Ella-Marie was diagnosed with Biliary Atresia, a rare liver disease. An eight hour Kasai procedure was performed on Ella-Marie to help restore the bile flow from the liver to the small intestine. On September 17, Ella-Marie was listed for a liver transplant. The family was informed that Ella-Marie’s mom was not eligible to become her living donor, however on November 2, a liver became available for Ella-Marie. The Foundation provided financial support throughout the transplant process allowing the family to focus on little Ella-Marie.
M
acy was born November 16, 2011. At age one it was discovered that Macy had a damaged liver, a result of a genetic disorder called alpha-1 anti trypsin. However, it was still functioning adequately and doctors told Macy’s family that this condition could only be monitored and managed, but that it may result in her needing a liver transplant at some point in her life. In August 2015, Macy contracted an infection and in four months was hospitalized four times. On September 15, Macy’s specialist recommended she be referred to Toronto SickKids hospital for a transplant assessment. On November 19, Macy received 22% of her mother’s liver and 12 short days later was released from hospital full of energy. “We are so grateful to the David Foster Foundation for being there for our family during an extremely difficult time.” – Ashley, Macy’s Mom
cody
E
C
ody is 16 years old and was born with a congenital heart defect that required four heart surgeries before the age of two. Life was pretty normal for 13 years until Cody underwent his fifth open heart surgery. Due to complications during surgery, Cody was outfitted with a LVAD system that assisted his damaged heart to pump. “I was listed for a heart transplant on October 11, 2013 and I am still waiting. Waiting sucks. I never, ever thought it would take this long. I have not been able to go to school since 2013. I have lost all of my friends because I am too self-conscious to go out because of my LVAD. Before all this happened I used to wakeboard, ATV, long board, swim, snowboard etc. I have not been able to do any of this for the past three years and it is very tough. With my LVAD I am not allowed to go in water so I am even looking forward to just having a bath.” – Cody Eric
ric was listed on February 17, 2016 for a double lung transplant after complications from the chemotherapy treatment he received after his two bone marrow transplants in 2012 and 2013. Eric has Bronchiolitis Obliterans, an irreversible lung disease which is an inflammatory obstruction of the lung’s tiniest airways. Eric is required to use a wheel chair and be on oxygen 24/7. Today, the family is separated by over 450 km while Eric and his mom patiently wait for a double lung transplant in Toronto. The David Foster Foundation is proud to support the family and to help cover the additional non-medical costs that they are not able to cover themselves in Toronto while waiting for a life-saving lung transplant.
10
Spring 2016
macy
www.davidfosterfoundation.com
Spring Cleaning for a Cause
T
his spring, the David Foster Foundation has partnered with National Partner, Schnitzer, and Victoria, BC-headquartered Used.ca (UsedVictoria.com) to encourage residents who are spring cleaning to sell or scrap their household items through the free scrap metal donation bins in Victoria and Duncan or the #UsedHelps platform. In 2013, the David Foster Foundation teamed up with RBC and Schnitzer Steel to create a scrap drive on Vancouver Island, raising nearly $25,000! Since then, Schnitzer has a bin set up at both locations allowing people to donate their scrap metal with proceeds going to the Foundation. To date, $195,659.05 has been raised! #UsedHelps allows people to sell their previously loved items on the popular website Used.ca and have all proceeds go to a charity of their choice. The Foundation is one of the 45 national charities listed that you can donate to. Schnitzer Steel Locations: 307 David Street, Victoria Tel: 250-381-5865 3015 Boys Road, Duncan Tel: 250-746-4573
For Sale
GOT SOMETHING FOR sale? No problem! 1. Go to Used.ca 2. Select your location 3. Click the “Place an Ad” tab 4. When prompted, click “YES” for donate to charity and pick the charity of your choice. 5. Feel satisfied that you are helping an important cause from the comfort of your own home!
For Scrap
HAVE A BROKEN BIKE? WE CAN HELP WITH THAT! 1. Visit one of two Vancouver Island Schnitzer Steel locations, either in Victoria or Duncan. 2. Toss desired scrap into bin marked “David Foster Foundation”. 3. Bins are available 24 hours a day. 4. Leave knowing you are helping a cause and have more space in your garage.
thanks to our national partners
thanks to our life legacy members TELUS | Slaight Family Foundation Newton Glassman Charitable Foundation in Partnership with Catalyst Capital Group Tan Sri Dr. Francis Yeoh | Jim & Sandi Treliving David Foster Foundation Newsletter
11
winnipeg!
save the date saturday, SEPTEMBER 24, 2016 MTS centre, Winnipeg, MB, canada A night you won’t want to miss, a cause you will never forget! For updates visit us online at: davidfosterfoundation.com
p r o u d ly p r e s e n t e d by
I N PA RTNERS H I P W I T H
LU X URY SPONSOR
RED C A RPET SPONSOR s BONN I E & J O H N BU H LER
e x ecu t i v e p r o d u cer
o f f icia l h ot e l pa r t n er
gal a sponsor
i n v i tat i o n s & g r a p hic d e s i g n
C40517