Happy Birthday Hillary – Time together as a family

This morning, we met with the transplant team at Sick Kids Hospital in Toronto via telemedicine. It has really sunk in, now. So many of you messaged birthday wishes to Hillary. So many have sent personal messages of hope. So many have asked for an update, and we have so many people to thank. But, today was simply the hardest day of our entire lives thus far… juxtaposed with the pure joy and happiness of our now six-year-old child. It’s been very hard keeping her bright light contained while we try to keep her safe and infection free, but we are going to continue to fight for Hillary’s safety. 

Please give us some time to provide an update. We need to spend time together as a family. We need to rest for a minute. We need to regroup.

Once we’re ready, we will come back fighting — stronger and more unified than ever. We will be ready for the second July 4 stem cell registry event, and the one after that. We vowed to leave no stone unturned for our daughter, and that’s exactly what we’re doing. There is no feeling like it in the world. Steve and I will be there on Thursday to thank everyone personally for such selflessness.

Thank you for your patience, support, and understanding. Please continue to have hope in your hearts for Hillary as she battles this bizarre medical mystery. Positivity is the most important gift we can give her… and her sweet sister, Alyssa.

Wow #Ottawa, you broke the record

Wow Ottawa, you smashed it last night. You turned up in droves to join the global stem cell registry. After an unprecedented 630 registrants, we ran out of kits, and had to turn another 500 away. 

To the mom and her son from Montreal who was turned away, please message us. We will drive a kit out to you personally. To the family and friends who sat at the back, feverishly assembling more kits for Canadian Blood Services, thank you. To the handful of people that came to join, but fell outside the 17-35 demographic, thank you for coming. Please continue to support this cause, and keep donating blood. To the friends and family that we have not seen in decades who came for just a hug…you’ve moved us with your kindness and love.

To the young men and women of all backgrounds who came out, shook our hands, and said “no problem” … you really demonstrated that you got it. You heard the call, understood this complex issue, knew how easy it was, and did what you could. You just needed a reason. We are organizing another event within the week. If you were willing to come out last night, please be willing to come back for another try.

We’re sorry we ran out of kits, but we’re not sorry you heard Hillary. She knew if she spoke loud enough, you’d hear her. This is Hills, and big sis, sweet Alyssa, on their way to CHEO yesterday morning at 7:00 am, before the successful drive event. You might want to turn down your volume.

Hear our call and join the global stem cell registry

Please join us on Monday, June 24, 2019 at St. Francis Xavier High School, 3740 Spratt Road from 3:00 to 7:00 pm to join the bone marrow registry in person. It takes ten minutes to see if you can save a life. Young, male donors ages 17-35 offer the best patient outcomes, but females can donate, too. Please print the poster… post it, pin it, share it. 

Please shake our hands, every single one of you. The impact you are having on generations of thinkers by joining the registry — or simply sharing and spreading awareness — is truly profound. Be fiercely proud.

We sent out a cry for help, and you heard it. That’s what makes us human… alive. Our DNA is not ours alone. It belongs to the evolution of mankind. There is still so much work to do here, particularly for the underrepresented. We will #StartWithHillary and never, ever stop.

The beginning – A one in a million diagnosis

This is Hillary. She is six. She has big dreams of being a rockstar. She is always singing. On May 12, 2019 (Mother’s Day), after a blood test, we were called in the middle of the night to bring her to the nearest emergency room immediately.

Hillary underwent two urgent life-saving blood transfusions. She was admitted to the Children’s Hospital of Eastern Ontario (CHEO) and further tests ensued. A chest x-ray and surgical bone marrow biopsy revealed that she did not have cancer. Samples of her blood were sent out all over the world — London, New Zealand, Vancouver, and California. We found ourselves tumbling down the rabbit hole as doctors systematically ruled out over twenty genetic causes and viruses in a race against time to determine the best treatment.

Hillary is sick.

She has been diagnosed with an extremely rare and fatal disease if left untreated, Idiopathic Aplastic Anemia. Affecting approximately one per million people a year, this disease causes Hillary’s bone marrow to stop producing enough red cells, white cells, and platelets. She continues to receive blood transfusions to keep her alive. We knew Hillary was one in a million; we just didn’t know it would be in more ways than one.

Her low red cell count means she is pale and constantly exhausted. Her low white cell count means she is highly prone to infection. Her low platelets have resulted in full-body bruising and uncontrolled bleeding. She cannot attend school and requires constant care. Time has stopped for all of us. All we can do is watch and wait.

Hillary needs a life-saving bone marrow transplant.

Her big sister, Alyssa (8 years old) was immediately tested as a potential donor. She is only a partial match. Hillary requires a 10/10 match. This has been extremely difficult for Alyssa in so many unfair ways.

A transplant from an unrelated donor provides an estimated 85% chance of survival from this disease. If we are lucky enough to find a match, we will then need to relocate to a hospital with a transplant centre (Toronto or Montreal). We must then pray that her body does not reject the transplant, and make sure she remains infection free. Hillary’s recovery will be critical. She has a long journey ahead of her towards a healthy life.

We’ve organized numerous blood donor clinics in the city of Ottawa on behalf of Canadian Blood Services — only to now be in desperate need of blood. Our daughters have donated their hair twice to the Canadian Cancer Society — only to have to watch Hillary lose all of her hair for her upcoming treatment. We’ve given our hearts and time to causes like United Way Ottawa as a recognized Community Builder to help those in need — only to now be a position of need ourselves.

Not everyone will find a match.

This call for help is not just for Hillary. It’s for every human whose life can be saved by the selflessness of another. As you’re reading this, there are 18,000 people around the world waiting for a match — 800 in Canada alone.

Wherever you are in the world, join us in our quest to increase the World Marrow Donor Association registry. Hear this call for a cause bigger than yourself. Willingly offer something that replenishes within yourself effortlessly, and let young children like Hillary grow old, sing…shine.

Reality has been blurred with nightmare. We just can’t take a passive stance. We have to fight. We will leave no stone unturned. Your participation is appreciated beyond measure, as are your prayers for our sweet, sweet Hillary. God help us.