David Foster Foundation Spring Newsletter 2023

CELEBRATE the Gift of Life

Kolt’s Transplant Story

TRANSPLANT NEEDED: HEART

HOME: EDMONTON, AB

Robin and Bryan live with their beautiful family in Edmonton, Alberta. The couple had five children: Kiara, Karissa, Kashton, Kalyssa, and Kylie when Robin found out she was expecting their sixth child. During a routine 12-week ultrasound, Robin had a Nuchal Translucency Screening to measure the thickness of the fluid at the back of the baby’s neck. A couple of days later, Robin’s doctor called her to share the results of her ultrasound. At that moment, Robin had no idea that something so simple could shatter and forever change her family’s life. Their baby was positive and potentially at risk of Trisomy 13, a genetic disorder that fewer than 10% of babies diagnosed with survive. With a potential diagnosis of something so rare, their doctor recommended they did further genetic testing to get a clearer answer. The additional testing came back negative, however their doctor was not convinced on the latest results and felt something wasn’t right.

On Robin’s next ultrasound, it was confirmed that their baby didn’t have the four chambers a normal heart was supposed to have. With no answers, the DuPont family waited to speak to a specialist.

At 20 weeks, a specialist confirmed that their baby had a severe heart defect and was officially diagnosed with Complete Atrioventricular Septal Defect, Coarctation of the aorta, Hypoplastic Left Heart Syndrome, and a severe AV valve regurgitation, which ultimately led to them being told their baby would not make it to birth and it was recommended to not continue the pregnancy. This was not an option

Grateful For Your Support

Message from the Chairman

It has been 37 years since the inception of the David Foster Foundation, and I could not be more proud of what we have accomplished in nearly four decades. From the beginning, it has always been my

goal to raise awareness and educate people about the importance of becoming a registered organ donor and support families whose children are going through the life-saving organ transplant process. I never anticipated the Foundation to become my legacy, but now I can’t imagine it not. More than ever, my heart aches for the families who are going through this difficult journey. It really hits home watching my son grow and experience things in the early years of his life when I know many families

Bringing Brighter Days

Message from the Chief Executive Office

Spring is such a great season, I love when the warmer months start happening when people are outside adventuring, exploring the beautiful outdoors, and creating memories. Spring brings new light and life to everything around us, and I am so grateful that I get to enjoy and watch spring welcome in the new life of the blossoms and incredible array of coloured flowers. The days are longer, and the sun is brighter which makes you want to be outside and appreciate enjoying all of these seasonal changes.

However, the sad reality is, we have so many families in the darkest moments of their lives as their child waits for a life-saving organ transplant. That is

why the David Foster Foundation works so hard to support families through these difficult and dark times in hopes that they will also get to enjoy those beautiful bright spring days.

The heroic and selfless act people take by registering with the intent to become an organ donor is the exact reason the families we support get to enjoy the seasons change when their child has finally received the transplant they desperately need. Without people like YOU and people who register their intent to one day become an organ donor, our transplant families wouldn’t have the hope that they have today.

As you enjoy the little things and watch the seasons change,

are desperately waiting for that same opportunity. I am incredibly grateful to all of our donors who have and continue to support my Foundation and the families we assist.

We truly could not do what we do without the generous care of our donors, sponsors, and supporters who have been with us and continue to believe in what we do year after year.

I encourage you to speak with your loved ones and register to become an organ donor. You never know, one day that someone waiting for an organ could be you… how great would it be if that simple act of registering could save someone’s life.

With sincere gratitude,

Unfortunately, the Numbers Don't Lie! Message from SVP, Fund Development

Like many of you, I do the shopping in my household and since the beginning of COVID, I have unfortunately experienced the incredible rising costs of virtually everything. Even the “substitute” and sundry items have been hit. Once again, like many of you, over the past four years I have had to “sharpen my proverbial pencil.” All of us have been pushed to the limit, pushed to change our lifestyles and shopping habits; eat differently, shop and travel less. The operative mindset when shopping is if it isn’t necessary, then it isn’t part of the shopping basket.

As you know, the David Foster Foundation provides assistance to families going through the pediatric living-saving organ transplant process by providing financial support for non-medical expenses, for example: rent, mortgage, interest payments, fuel, food, accommodation, clothing, car payments and the list grows. Combine the emotional hardships of transplant

It Takes a Village

with the financial ramifications it can have on a household, sometimes a household with a single income or two or three more children, and you can see how families are faced with one of the most challenging times of their lives.

The numbers don't lie!

1. Between 2019-2023 which includes COVID, our total annual cost to support our families has increased to an outstanding 93%.

2. Between 2019-2023 which includes COVID, our cost on average to support a single family has increased by 147%.

A serious and most disturbing result of the economic conditions over the past four years.

In short, our families have and continue to experience an unconscionable financial burden. Without your financial support, the well-being of our families is at risk.

Message from Director of Family Relations

In the past five years I have been with the David Foster Foundation, I have had celebrated with each family as their child receives and recovers from transplant and are discharged home where they can finally enjoy life outside of a hospital bed. I understand how the months, or even years, long transplant process affects families and the joy that is felt when an immensely sick child has respite from their pain. Alongside the joy that some families find, I have also been heartbroken to hear that a child whose family we assisted had passed away because they did not receive the life-saving organ transplant they needed.

As we celebrate National Organ and Tissue Donation Awareness month in April, I encourage you to register as an organ donor and talk to your loved ones about your wishes. Registering as an organ donor could save lives.

I also want to acknowledge the huge teams that support the families the Foundation assists: their social workers, doctors, allied health professionals, nurses, family members, community members and the list goes on. It really does take a village and it is an honour to work alongside so many caring individuals dedicated to supporting transplant families and raising

Every dollar counts, no matter the amount. You can support our families in the following ways:

How to make a donation to the Foundation:

1. Mail your cheques to David Foster Foundation, 212 Henry Street, Victoria BC V9A 3H9

2. Please call 1-877-777-7675

3. Online through PayPal at davidfosterfoundation.com

4. Electronic funds transfer— please email info@davidfosterfoundation.com

With sincere regards,

awareness about the importance of organ donation.

Sincerely,

This was the absolute worst rollercoaster ride to be on. Doctors tried to prepare us for the worst and broke the news that Kolt might not make it and needed a heart transplant now. We were allowed the opportunity to bring our other children in to meet him for the first time while we waited for that life-saving call.

or even a consideration for Robin and Bryan, they wanted to fight for their baby boy and wanted to take it day by day and appointment after appointment. The doctors assisted with more genetic tests to completely rule out Trisomy 13, and fortunately, his amniocentesis came back normal completely ruling out that diagnosis.

On March 15, 2022 Kolt DuPont came into the world fighting and made a loud entrance that announced his arrival. Kolt was immediately put on IV medication that encouraged blood flow through his tiny body. Much to the doctor’s surprise, Kolt was doing extraordinary and was even breathing all on his own with the support of the medication. Later that day, it was decided to try him without the IV medication but unfortunately, as soon as they took him off he could no longer breathe on his own and had to be immediately intubated. He was put back on IV medication and put into an induced medical coma to prevent his heart from working too hard.

At only two days old, Kolt’s ventilator clogged, and he was given CPR for 45 minutes before being reintubated. A traumatic moment for the entire DuPont family and Robin remembers it, “it was absolutely devastating to go from carrying my sweet baby for nine months, where I felt he was protected, to watching my tiny baby surrounded by doctors, and on only his second day fearing for the worst. I will never forget how terrifying that moment in time was.”

At five days old on March 20th, Kolt was officially listed as a Status 4, the most urgent status, for a heart transplant. At six days old, Kolt had his very first open-heart surgery

for pulmonary artery banding. He received a pacemaker and was placed on dialysis as well. Shortly after, the family watched Kolt open his eyes again. Even though he was incredibly weak and wasn’t able to move his body, he would move his little tongue as if he had a soother. This was an incredible moment for the family.

When Kolt was one month old, he received a stent to keep his duct open which allowed him to be taken off the IV medication he had been placed on since birth. Kolt was very, very weak and unable to move his small body. He was placed on hold for a transplant, as his specialist team did more genetic testing to try and determine if a muscle disorder was causing these health issues. This was incredibly disheartening for the family and left them unknowing what to expect.

It was an ongoing battle for the DuPont family with countless challenges. Robin and Bryan remained bedside with Kolt through everything he went through and watched him battle against the odds while managing the care of their other children at home. Robin remembers, “Bryan and I barely saw each other. Our other kids were miserable because they went from having us home all the time and always doing things as a family to only seeing mom or only seeing dad. They were scared for their brother and didn’t understand why he couldn’t come home.” When Kolt’s chest tubes were being removed, they had become stuck and tore his lungs which required an emergency thoracotomy to repair the damage that had been caused. Kolt continued to fight for his life while his heart continued to fail at a rapid pace.

Kolt’s genetic tests came back negative, and he was placed back on the transplant list at a Status 4 for a heart.

The next couple of weeks were a blur for the DuPont family filled with uncertainty, emotion, and hope. After much discussion and planning by their doctors, Kolt was now 10 weeks old and was going to receive an LVAD which

We are forever thankful for another family’s selfless gift in an absolutely devastating time. Kolt is the happiest baby and now he will be able to grow up with his siblings and live a happy life.

was incredibly rare for a baby his size. After his second open-heart surgery that lasted for a grelling eight hours, Kolt came out of that surgery the healthiest everyone had seen him. He had colour back in his face and was gaining strength in his arms and legs. The LVAD was the perfect bridge to transplant to allow Kolt to be in the best condition to receive a heart transplant.

Exactly one week after the LVAD surgery, the DuPont family received the call no parent could ever forget: the medical team had a heart for Kolt. On June 1, 2022, at only 11 weeks old, Kolt received the gift of life.

As any transplant family knows, Kolt had a difficult road ahead of him. Finally, after seven months of being in the hospital, Kolt came home for the very first time. He was able to spend his first Christmas with his siblings. They giggled, played, and created memories together – finally.

Today, Kolt is still on lots of medications but slowly eliminating a few of them. Bryan and Robin say, “Kolt is doing wonderful, despite everything he’s been through. He is the happiest little guy and will brighten any room with his smile. He is working on his balance and almost sitting up on his own. He is also working on his strength and is able to almost get up on his knees to crawl. He likes to blow bubbles and babble, and he loves to play, especially with his siblings. He absolutely loves music and when we sing to him. His appointments are finally starting to become more spread out which is fantastic. He’s happy to be home.

We will also always be thankful to the David Foster Foundation and their incredible generosity in supporting us financially. They were our saving grace in the most difficult time of our lives. Because of them, we were able to spend all the time we needed with our sweet baby as he fought for his life. We will always hold the Foundation near and dear to our hearts.

Did you know…

• One organ donor can save up to eight lives and can improve the quality of life for up to 75 people.

• Over 90% of Canadians support organ donation, however, only 32% are registered organ donors.

• Every 30 hours, a Canadian on the transplant waitlist will pass due to an organ not being available.

The David Foster Foundation is dedicated to providing financial support to Canadian families with children in need of life-saving organ transplants. In addition to helping families with their non-medical expenses, the Foundation strives to increase public awareness about the importance of becoming a registered organ donor in Canada and the United States.

For Organ Donor Awareness and Registration

Five years have already passed since April 6, 2018, when Canadians were heartbroken to learn about the tragic Humboldt Broncos bus crash. Of the 29 passengers, sixteen lost their lives, and thirteen will all bear physical and emotional scars for life.

On April 7, 2018, Humboldt Broncos defenceman Logan Boulet succumbed to his injuries. His parents, Bernadine and Toby Boulet, offered to donate his organs so that six lives could live on. They did so because Logan told his parents he was registering as an organ donor and that his coach and mentor Ric Suggitt inspired him. Ric passed on June 27, 2017 and was also an organ donor and saved six lives.

Logan’s gift of life and his family’s selflessness inspired nearly 150,000 Canadians to register their wishes to become organ donors and this movement has come to be recognized as the Logan Boulet Effect. Logan’s legacy reminds us how important it is to talk to your loved ones about your organ donation wishes. To increase awareness, it is suggested that every person who registers with the intent to one day donate speaks to four people about organ donation. This means that

with every 100,000 newly registered donors, 400,000 conversations about organ donations will have occured.

Every year, on April 7th, Green Shirt Day is celebrated and honoured. Canadians across the country will be wearing their green shirts proudly to honour the Logan Boulet Effect and raise awareness for organ donation and registration.

HOW YOU CAN GET INVOLVED AND INSPIRE OTHERS:

• Proudly wear green

• Register to become an organ donor

• Talk to your family

LEARN MORE ABOUT GREEN SHIRT DAY

@ greenshirtday.ca

Cares for Kids

Thank you to WestJet Cares for Kids for providing three families an unforgettable evening at three Calgary Roughneck’s games this winter.

WestJet kindly gifted the Foundation tickets to three different lacrosse games the Roughnecks played in Calgary. At each game the child that attended was given the title of WestJet Captain of the Game and was brought to the turf with the Roughneck’s mascot, Howie the Honey Badger, where they were recognized and tasked with kicking off the game.

Markus, who received a kidney in November 2021, attended a game with his parents and brother. Calvin’s family celebrate his first year post-transplant at a game in January 2023 as he received a kidney transplant in January 2022. Emmitt, who received a liver transplant in August 2019, also attended with his family. All three boys and their families had so much fun.

After the game they attended, Calvin’s mother, Christine, shared the following: “Thank you so much! We had a blast. It was a super exciting game. It was so wonderful to see Calvin enjoying every minute of it. It was such an amazing way to celebrate 1 year post transplant. I think he is into lacrosse now��."

Thank you WestJet! #WestJetCaresForKids

Thankyou!

The Hope Everything Will Be Okay

Cam Tait of Edmonton is a veteran journalist, author and comedian who lives with cerebral palsy. Overcoming great odds to live independently and work full time, he serves as a role model to future generations of Canadians.

I’ve never had the pleasure of welcoming my own baby born but, I think I can imagine the endless joy a new father experiences. I was, however, at the hospital when our first grandson, Nick, came bouncing — he still is — into our lives. I’ll never forget my stepson Darren dressed in green scrubs, stopping, turning around, and asking: “Everything is going to be OK, right?” We smiled and nodded yes to give Darren confidence. We did that with our hearts. But its northern neighbour, our brains, realized there was a chance something could happen. Fortunately, everything was fine: Nick and Mom were fine.

It’s a question we often ask after the birth of one of the newest citizens of our planet: “Is everyone OK?” But we tell ourselves after we speak the first word of this four-word query that the answer is a given — like it was for Nick. But sadly, a positive response isn’t always given. We stop and, frankly, are in shock. We blindly look for the words to show support and give comfort. We know — even if we gently ask, “What can we do?” — we do not process an appropriate reply. Helplessness: one of the most lonely and perplexing experiences we have.

But for youngsters born requiring life-saving organ transplants, and their blessed parents, help is a mouse click away. It’s yeoman’s work: something the David Foster Foundation has been doing for decades. I equate that response to the same feeling I get as I hang up the telephone after confirming a doctor’s appointment. My medical future may be in jeopardy, sure. But just knowing someone cared and someone with the knowledge and expertise is going to see me provides bright rays of hope.

And knowing I am not alone. But, still, when news is delivered — news of fear, of uncertainty — it reverts that feeling of hope to our minds, helplessness, going down dark, dark back alleys.

“Everything is harder to handle as it has to revolve around the possibility of receiving the call at any moment,”

Kyla Thomson said of her daughter Bella, who, at the age of three days, was diagnosed with Hirschsprung’s disease, a disease affecting an infant’s intestines and making it impossible for them to have bowel movements. “Emotionally Bella is very excited to receive her new bowels. She knows very well how it will change her life for the better. So, she is very positive about it and looks forward to the bowel transplant.”

And that’s wonderful. But: “For myself and my husband Lyle, we feel like we are in a constant state of ‘what if.’ And the mental toll that takes on us is something we battle every day,” Perhaps, though, the load is softened knowing a family, like Bella’s, has an army of support supplies when they needed it the most.

If that is, indeed the case, the answer to our original question rings and echoes of resounding hope that everything will be okay.

Thank You LifeNote!

Brilliant music filled The Merc in the Old Town Temecula Community Theater in Southern California again! LifeNote concert returned after a pause due to the COVID-19 pandemic on November 11, 2022.

THANKS TO ALL OUR PARTNERS

Life Legacy Members

Above: We need a caption here.

Below: We need a caption here.

For their seventh year, roughly 100 talented young musicians and their teachers in the Temecula California area were very proud to raise nearly $8,000 for the David Foster Foundation during this successful concert. Founder of LifeNote, Dr. Dan Friedlich notes, “The young musicians understand that their performance on stage is directly benefiting patients undergoing organ transplantation, and it so important for children to learn the value of charity.”

LifeNote concert is a grassroots effort that could be coordinated in any city to fundraise for the David Foster Foundation, and their team is always looking for people to volunteer or bring the concert to their community.

The David Foster Foundation is extremely grateful honoured to be the beneficiary of the LifeNote concert for a second time.

To date, LifeNote has raised $24,000 for the Foundation and has been an instrumental part in raising awareness for organ donor registration, and highlighting the value of giving back while encouraging youth to pursue their passion for music.

National

Cares for Kids

Community

YOU ARE THE KEY TO HELPING SAVE LIVES THROUGH ORGAN DONATION…

As National Organ and Tissue Donation Awareness Month begins, we have an important message from David Foster Foundation. There is a chronic shortage of most organs needed for transplant in Canada and the United States – currently, more than 4,000 Canadians are waiting for organ transplants, and too many of them are children.

Organ and tissue donation provide each of us with a special opportunity to help others.

Please consider becoming a registered donor and talking to your family about your wishes.

BECOME AN ORGAN DONOR…