David Foster Foundation 2019 Summer Newsletter

Summer 2019 Volume 27

CELEBRATE The Gift of Life Rosie's Transplant Journey

Four-year-old liver transplant recipient, Ella-Marie.

WHAT’S INSIDE 1 Message from the Chairman . . . . . . 2 Message from the CEO . . . . . . . . . . . . 2 Rosie's Transplant Journey . . . . . . . .

Message from the SVP, Fund Development . . . . . . . . . . . . .

Message from the Director of Family Relations . . . . .

IPTA Congress . . . . . . . . . . . . . . . . . . . .

Save the Date—Vancouver Island Concours d'Elegance . . . . . . . . . . .

Family Story Updates . . . . . . . . . . . . .

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Thanks to Our Life Legacy Members & Partners . . . . . . . . . . .

9 10 RBC Rewards . . . . . . . . . . . . . . . . . . . 10 Donate with Schnitzer Steel . . . . . 10 Organ Donation Facts . . . . . . . . . . . 11 New Community Partner . . . . . . . .

Thank You to Our Simply Spectacular Presenting Partners . . . . . . . . . . . 12 212 Henry St., Victoria, BC V9A 3H9 Office: 250.475.1223 Fax: 250.475.1193 Toll Free: 1.877.777.7675

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osalie (Rosie) was born on February 23rd, 2018 at home. She came into the world so quickly that the family’s midwives didn’t have time to make it to the house, so she was welcomed into the world by her parents, Samantha and Brian, and her siblings, Gia and Waylon. The next day, Samantha and Brian noticed that Rosie was very grey, almost navy blue when she cried, and lethargic. The midwives came to see the family and found that Rosie’s oxygen saturations were very low. The family was taken to their local hospital, and then flown over 100km by helicopter to SickKids in Toronto.

At SickKids, Rosie was diagnosed with Pulmonary Atresia with an Intact Ventricular Septum (PAVIS), which is a heart valve defect that does not allow blood to pump from the heart to lungs. She also had a single coronary artery, a rare heart abnormality. If those were her only diagnoses, the family could have opted to do multiple surgeries that were very risky, but would have meant that Rosie would not need a transplant.

PROFILE Rosalie (Rosie) Transplant: Heart Transplant Date: June 27, 2018 Home: Severn, ON

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Message from the Chairman Message from the CEO

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arlier this year, I had the privilege of meeting 1-year-old Rosalie.

She was full of energy, vibrant, and loved cuddling with her parents.

Rosalie wasn’t always this way.

Only a year ago she was waiting for a life-saving heart transplant at Toronto SickKids Hospital.

Transplant families face many trials and tribulations, and Rosie’s story is no exception. I sat with the Audia family and we talked about the financial struggles, the time spent apart from one another, and overall how stressful Rosalie’s transplant journey was.

(Read Rosie’s full transplant story continued on page 4).

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am looking forward to an exciting summer on Vancouver Island! First, we will be working exclusively with our friends at the GAIN Group and the Villa Eyrie Resort to host our second Simply Spectacular Experience with David Foster on Vancouver Island.

It’s wonderful to see so many of our supporters coming back together for such a special event showcasing our cause and the natural beauty of Vancouver Island. I am so appreciative of all the vendors, volunteers, and our core team that dedicate so much time and effort to this event. We couldn’t do it without you!

My hope when I started this Foundation in 1986 was to try and alleviate the financial stress that families face, and with your help, we have been able to make a difference. I am proud to report that we have assisted over 1,200 families and provided millions of dollars in direct support to families whose children are going through the major organ transplant journey.

Next, we are looking forward to working with the GAIN Group for the very first Concours d’Elegance held at Shawinigan Lake School on August 25. Formally known as the Vancouver Island Motor Gathering, this event has been a success over the past seven years, raising over $1,000,000 for local charities on Vancouver Island. The vehicles at this event will be remarkable; make sure to save the date in your calendar!

My work isn’t done. There are countless people waiting for a life-saving organ transplant, many of them children. This summer I urge you to speak with family and register your wishes to be an organ donor. One day you could save a life and give a little girl like Rosie a second chance.

I am also excited to announce that this year we are recognizing a new Community Partner of the David Foster Foundation. Joining the Oak Bay Beach Hotel, Boston Pizza, and Tom Lee Music will be long-time Financial Advisors and partners Matt Hillyard and Jeremy Stephen from The Hillyard Stephen Group of RBC Dominion Securities.

Visit davidfosterfoundation.com to learn more about organ donation and how to register.

Together, we have worked on many wonderful initiatives over the years and I am excited to see what else is in store for our partnership this coming year!

Thank you for making a difference,

David Foster Founder and Chairman

I hope that during this summer you will be able to take some time to be with your family and friends and be deliberate and intentional about spending time together.

In this hectic pace of life that we all get caught in, we must not forget what matters most, our family and friends.

From our family to yours, all the very best for a fabulous summer!

Sincerely,

Michael Ravenhill Chief Executive Officer

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www.davidfosterfoundation.com

Message from the SVP, Fund Development

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arly in the morning with a cup of coffee, I enjoy sitting on my porch, reminiscing and enjoying my favourite, and certainly a classic song from 1968, “Summertime and the Living is Easy” by the incomparable Ella Fitzgerald.

At this time of year, I often think about the circle around me and how fortunate I am in regard to my friends, colleagues, my donor relationships, most importantly my family and in particular, my four healthy young grandchildren. The operative word being “healthy”. I am one of the fortunate grandparents, as there are too many across Canada that have a grandchild going through the very stressful life-saving organ transplant process. If it wasn’t for the direct financial support of the David Foster Foundation, transplant families would be torn apart and living with acute financial stress.

We are sincerely grateful to all our partners who work with us to make a difference. Just recently, Aird & Berlis LLP donated 1,000,000 Aeroplan Miles to go along with the previous donation of 6,000,000 Aeroplan Miles.

Their commitment is a total of 10,000,000 Aeroplan Miles over a 10-year period. Every mile counts when we need to fly a family thousands of miles from their remote communities to one of the pediatric transplant hospitals.

Now, let me touch on something exciting—the Toronto Raptors. What could be the possible relationship between the Toronto Raptor’s winning the NBA Championship and the David Foster Foundation? A result of their success was the direct and immediate uniting of all Canadians.

Message from the Director of Family Relations

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his summer marks my first year at the Foundation, and what an incredible year it has been! The families that the Foundation assists have taught me so much in such a short time. They are families that are experiencing some of the toughest moments of their lives, for the transplant process is not an easy or short road to walk. From having their child be assessed for transplant, to being listed and waiting sometimes years for transplant, and then overcoming the hurdles that post-transplant recovery has—these families constantly inspire me with their strength.

The Foundation’s office is lucky enough to receive cards and emails from families that we have helped thanking us for the assistance we were able to provide. I wanted to share a part of a message we received from a family because without your support we could not help the families that we do.

“Thank you so much for all your support and care to us throughout our journey. We love you all! We will never forget you all!”

—Mother of liver transplant recipient

Sincerely,

Aleea Dahinden Director of Family Relations

Let’s replicate the Toronto Raptors win and unite the country, from west to east, by registering as organ donors. Remember, summertime and the living is easy!

Register today at davidfosterfoundation.com.

Sincerely,

John Danson SVP, Fund Development

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continued from page 1

“It truly was a 'love/hate' relationship with the PGEs [prostaglandins]. They kept Rosalie alive. But they also tortured her poor little body.”

The medication caused swelling and thickening throughout her body. She was unable to eat due to thickening in her stomach from the medication and due to this, the medical team advanced a tube into her intestines. She was unable to move her limbs and after 2½ months, required continuous morphine infusion because of the pain from swelling in a membrane layer around her bones called the periosteum. This periosteum thickening also caused her bones, primarily her hips, to form and grow abnormally. As a result, Rosie developed hip dysplasia.

She also had thickening of her eyelids and could barely open her eyes. Due to these side effects, in May when Rosie was just three months old, she was moved to the most critical status option on the transplant list.

Rosie awaiting transplant at SickKids.

At 5 days old, the family did further imaging and it was revealed that Rosie’s defects were too severe. Much to the devastation of Rosie’s parents, the surgeries would fail if attempted. It was determined that Rosie would need a transplant, and on March 5th, 2018 she was listed for a heart transplant. She was only 10 days old.

Shortly after Rosie was listed, the family found out that Rosie would need to remain an inpatient at SickKids until her transplant. Often, kids who need a heart transplant are able to have a stent put into the duct in their heart while they wait for transplant. Rosie’s heart had twists and narrowing, so a stent was not an option. She would have to remain on a medication called prostaglandins (PGEs) instead. Samantha reveals, “This medication came with a bunch of painful, scary side effects—especially because she required a significantly higher dose than normally administered… it truly was a 'love/hate' relationship with the PGEs. They kept Rosalie alive. But they also tortured her poor little body.”

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While Rosie was listed, Samantha stayed at SickKids with her, and Brian stayed at home with Gia and Waylon. As Samantha previously stayed at home with the children while Brian worked, the family’s two-year-old had to go to daycare and their six-year-old had to go to before/after school care, resulting in unexpected financial stresses during an already tumultuous time. On the weekends, Brian would drive over two hours with Gia and Waylon to Toronto to visit Samantha and Rosie. Samantha acknowledges that Rosie’s medical needs altered their family forever. “Having a child who almost died and who has special needs changes everything. Our older two children went five months with only seeing their mom and baby sister on weekends. And seeing their baby sister constantly swollen and hooked up to tubes and wires. They could barely touch her. It would be impossible for this circumstance NOT to change us and our family. It was a scary year.”

The family’s social worker told Samantha and Brian about the David Foster Foundation once Rosie was listed for transplant. The Foundation is proud to have been able to provide funding to Rosie’s family for the extra expenses they incurred because of transplant such as childcare, accommodation in Toronto, gas, parking, and meals at the hospital. Samantha shares that the Foundation provided “so much relief during THE scariest, most stressful time so far in our lives. We did not have the mental energy to have

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David Foster meeting with Rosie's father, Brian, Rosie, and Rosie's mother, Samantha in Toronto after Rosie's transplant.

to worry about providing for our family during this period of time where we lived in two different places. And DFF single-handedly took that stressor away.”

After over 16 weeks, the day the family was waiting for came. On June 26th, 2018 at 7am, Samantha and Rosie were visited in their room by one of the transplant team cardiologists. There was a heart for Rosie. After a successful surgery, in the earliest hours of June 27th Rosie’s gift of life began beating in her chest.

Post-transplant, Rosie was required to stay at SickKids while she recovered. She had many more medical procedures including an MRI and gastronomy tube insertion. One month after Rosie’s transplant, the family shared this message with their loved ones, “One month ago today, your broken heart was removed from your tiny body. Shortly after, the heart from another little baby started beating in your chest, giving you a second chance at life. Thank you donor family, for this heartbreaking, selfless decision. I think about you every day. Words cannot express how much your family means to us. Rosalie, these past five months have been the biggest challenge I could

never have even dreamed we would be enduring. But we would fight for you all over again if we had to.”

June 27th, 2019 marked Rosie’s one-year heart transplant anniversary. Samantha shares with the Foundation that “things do not end here in her health journey. Transplant is not a cure. Rosalie will remain on immune suppressing medications her entire life and will always be at a heightened risk of getting very sick. And with current medicine, at some point this heart will fail to work in her body and she will need another transplant. We pray that is decades from now and hopefully by that point there are different options available!”

Today Rosie is doing well, and the family continues to celebrate the milestones that Rosie meets like gaining weight, transitioning into having her tube supply blended food instead of formula, and getting to celebrate her transplant anniversary with her family’s loved ones.

Thinking back on Rosie's transplant, Samantha states that, "Our family is much more intentional. Compassionate.

Slower paced. We don’t take things for granted that we used to. It has definitely made us all closer.”

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IPTA Congress

Foundation staff Aleea Dahinden (left) and Alicia Moyes (right) at the Foundation's booth at the IPTA Congress.

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transplant patients and their families have during their transplant journey.

The congress brought together 522 participants from all over the world; 63% of participants were from North America, 20% from Europe, 5% from Asia, 4% from Latin America, 4% from the Middle East/Africa, and 3% from Oceania. Participants were from an array of disciplines across transplantation and included professionals who were doctors, surgeons, researchers, social workers, and allied health professionals.

Exhibiting at this congress allowed Foundation staff to speak to people from across the globe who are involved in the pediatric transplant process. They were able to connect with several transplant professionals in Canada and share information about the Foundation, as well as meet in person several people they speak to via email or phone on a regular basis. They were also able to explain to people from places like New Zealand, Peru, South Africa and France what the Foundation does.

Of special note, many people from countries outside Canada said they wished an organization like the David Foster Foundation existed in their country, and that the funding it provides fills a very important gap in support for transplant families across the world.

Staff who attended the congress sat in on several sessions that were offered which expanded their knowledge of transplantation across the world and offered an educated view on the experiences that

The David Foster Foundation would like to thank Dr. Anne Dipchand and the International Pediatric Transplant Association for allowing us to attend such an educational and important event.

n May, the David Foster Foundation attended and exhibited at the 10th Congress of the International Pediatric Transplant Association in Vancouver, BC. The association works to advance the science and practice of pediatric transplantation worldwide in order to improve the health of all children who require such treatment. The congress facilitated the sharing of knowledge to help advance this goal.

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www.davidfosterfoundation.com

Save the Date!

See cars like this and more at the Vancouver Island Concours d'Elegance on August 25th at Shawnigan Lake School.

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he David Foster Foundation is thrilled to be part of the new Vancouver Island Concours d’Elegance event presented by the GAIN Group on August 25th, 2019 at Shawnigan Lake School.

Formerly the Vancouver Island Motor Gathering for the past seven years and growing from 85 vehicles to over 600, the GAIN Group has refreshed this year’s event to create a unique experience unlike anything on Vancouver Island. The vehicles featured at this luxury event will highlight significant classic, custom, and modified cars. The elegant location boasts unique architecture and history that pairs perfectly with the presentation of the new show.

The funds raised through spectators and sponsors will support two charities on Vancouver Island, the David Foster Foundation and the Cowichan District Hospital Foundation. Since inception, the GAIN Group has raised over $1,000,000 for local charities through these spectacular auto shows.

Join us for a fun-filled family event showcasing an array of dream cars, racing greats, and luxury models for car enthusiasts of all ages from 11:00 am – 2:00 pm at Shawnigan Lake School on August 25, 2019.

To learn more about this year’s Vancouver Island Concours d’Elegance, please visit islandconcours.com.

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Family Story Update! goes. But still, her transplant has never slowed her down! This summer she plans on going camping with her grandparents and helping mom and dad put up a new play structure for her in the backyard. She is going to start soccer and she can’t wait! She loves to ride her bike, go to the park, and be outdoors. She is a truly remarkable six-year-old.

Hailey, Lily and Mark enjoying Disney World during Lily's Make a Wish trip.

Of course, we still can’t thank the David Foster Foundation enough for what they did for our family.

When Lily was sick and spent nearly eight months straight in the hospital, they helped us be a family.

They helped her dad fly in from out of province and helped us not worry about normal living expenses while being by Lily’s side. We are forever grateful for them. Nothing we could say could really express our gratitude towards this amazing Foundation.

Thank you, Hailey Hague (Lily's mom)

Lily Hague

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ily Hague is now a 6½ year old! She is an extremely energetic child. She is coming up to her 6th liver transplant anniversary in August. By just looking at her, you would never believe that she had a life-saving liver transplant. Her current health status is amazing! She takes her two medications daily and gets her routine blood work. She is at an amazing spot. She still gets hospitalized roughly two times a year, but the Stollery Children's Hospital in Edmonton always makes sure she is taken care of.

We have had a lot of fun things happen in the last few years. We went to Disney World for her wish trip through the Make-A-Wish Foundation. She got to meet all the princesses and it was her dream come true. One of her favourite parts was watching the fireworks. She literally jumped up and down for the complete 20 minutes. It was an amazing thing for us to watch her witness. My husband and I even got married this past December!

She was the flower girl and she thought it was the very best day because she got to stay up late and just dance the night away. She is still asking, “When am I going to be a flower girl again?” To think there was a time we didn’t know she would be here, and now to see her just live her life is amazing. To watch her live life to the fullest has been a dream come true. She is never short of energy, and never short of telling people what she thinks. We do still live life with some worries and we always want to make sure she is safe wherever she

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The Hague family on Hailey and Mark's wedding day in December 2018.

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Ella-Marie Moores

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he Moores family welcomed their third child, a beautiful baby girl named Ella-Marie, into the world on June 8th, 2015. After six weeks at home, the family brought her to the hospital as her skin and eyes were becoming yellow. On July 31st, Ella was diagnosed with biliary atresia, a rare liver disease, and was subsequently listed for a liver transplant on September 17th. On November 2nd, 2015 Ella received her liver transplant.

The David Foster Foundation was able to assist Ella’s family throughout her transplant journey.

Ella is almost four years post-transplant now. Her mother Ashley, shared this update with the Foundation: “Ella is a wild four-year-old. She has had impeccable health since her transplant. No real big health issues ‘knock on wood’ related to her transplant. She is a very tall four-year-old, very opinionated, and beyond special.

This summer she is visiting her best friend Jaxon overseas and going to her BIG brother’s baby shower (she’s going to be an AUNT!!)”

In June, the family celebrated Ella’s 4th birthday with a back-yard pig roast with family and friends. Ella, who is

Liver transplant recipient Ella almost four years post-transplant.

incredibly giving, asked for donations to the Foundation rather than gifts for her birthday.

The David Foster Foundation would like to take this opportunity to wish Ella a very happy belated birthday, and many thanks to her for her generosity and the kindness of all those who donated.

THANKS TO OUR LIFE LEGACY MEMBERS TELUS | Slaight Family Foundation | GAIN Group Newton Glassman Charitable Foundation in Partnership with Catalyst Capital Group Jim Pattison | Jim & Sandi Treliving | Parq Vancouver

THANKS TO OUR NATIONAL PARTNERS

COMMUNITY PARTNERS

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New Community Partner: Donate Your Scrap Metal The Hillyard Stephen Group with Schnitzer Steel

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he Hillyard Stephen Group initiated the first scrap drive with Schnitzer Steel in 2013 and since then, the David Foster Foundation has hosted multiple scrap drives that benefit transplant families across Canada.

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he David Foster Foundation is thrilled to welcome Matt Hillyard and Jeremy Stephen from The Hillyard Stephen Group as the newest Community Partner. The Hillyard Stephen Group is a full-service wealth management team that operates out of the RBC Wealth Management, Dominion Securities offices in Victoria, BC. The Hillyard Stephen Group has been instrumental in creating alternate ways for people to donate and give back the David Foster Foundation through scrap metal drives with Schnitzer Steel and advocating to be one of four charities listed through the RBC Rewards program.

By keeping metal out of the landfill, scrap drives help reduce pollution from mining and processing virgin minerals, reduce the need to extract resources from the earth, save large amounts of energy used to process raw materials, reduce harmful greenhouse gas emissions, and conserve resources for the future.

To donate your scrap metal, please visit Schnitzer Steel’s Victoria location: 307 David Street, Victoria, British Columbia, V8T 5C1

The David Foster Foundation is looking forward to creating new and exciting initiatives with The Hillyard Stephen Group!

Donate with RBC Rewards!

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s one of Canada’s premier providers of loyalty programs, RBC promotes the rewards options that help clients get the most from their points. RBC Rewards offers an option to donate your points to one of four charities of your choice, including the David Foster Foundation.

By converting your points to a cash donation, your direct support will help families in need. To donate your RBC Reward points, go to rbcrewards.com and, once you are logged in, navigate down and click “Donate to Charity”.

It’s that easy!

The donation of 2,500 points equals $25 to the charity of your choice and an equal value tax receipt.

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“The Hillyard Stephen Group has been instrumental in creating alternate ways for people to donate and give back the David Foster Foundation through scrap metal drives with Schnitzer Steel and advocating to be one of four charities listed through the RBC Rewards program.”

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to become an organ donor Go to davidfosterfoundation.com/be-an-organ donor

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Did you know…

• One donor can save up to eight lives.

• There are currently 4,500 Canadians waiting for an organ transplant.

• The oldest organ donor in Canada was over 90 years old.

• A single organ donor can improve the quality of life for up to 75 people.

• More than 90% of Canadians are in favour of organ donation, however, less than 22% of the population are registered organ donors.

• You are more likely to need a transplant than you are to become an organ donor.

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THANK YOU to our generous presenting partners for helping us raise funds in support of Canadian families with children needing life-saving organ transplants.