#StartWithHillary
Follow ten-year-old Hillary McKibbin in Ottawa, Canada in her fight against a rare blood disorder, Idiopathic Aplastic Anemia.
Help increase awareness of the global Stem Cell Registry and the need to increase diversification. Because everyone deserves an equal chance at benefitting from a life-saving stem cell transplant. Everyone has a match. They just need help finding it.
Let’s #StartWithHillary.
Hillary’s story — The beginning
Date: May 2019
This is Hillary. She is five. 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.
Join the registry.
Someone out there is searching for their match in order to survive. You might be it. With a simple swab of the cheek, you can find out if you can save a life. If called to donate, the procedure is safe with no lasting effects. Your bone marrow replenishes effortlessly. Hillary’s can not.
Canada is in desperate need for ethnically diverse males — age 17-35 — to join the registry. This demographic represents .1% of the global registry. That’s less than one percent. For such a multicultural country, this is both shocking and devastating, particularly for our Indigenous communities.
In Canada
Visit blood.ca/stem-cells or call 1-888-2DONATE to apply online for your registration kit, and mail your sample back in. It’s free and easy.
In the USA
Join the Be The Match registry in the United States by applying online.
In other countries
There are several criteria that may affect your eligibility to become a donor, depending on where you live in the world. Over 80 countries are part of the global registry. Visit the World Marrow Donor Association website to find your country and join the registry.
Figure courtesy of https://swabtheworld.com/
In the Media
- Students Saving Lives: The Next Generation of Stem Cells
Print News by MediaPlanet Canada, Health Insights, featured in MacLeans Magazine (October 2023) - Students Saving Lives: 580 CFRA News Talk Radio
Radio Interview by Host Andrew Pinsent (2022) - Diversifying the Stem Cell Registry with Hillary McKibbin
Opening Podcast for The Focal Point series by Host Chris Vallee (February 2022) - Students Saving Lives: Ottawa Now
Radio Interview on 580 CFRA by Host Patricia Boal (December 28, 2021) - StartWithHillary Interview: AMI Accessible Media Inc.
Digital Video Series AMI This Week by Chris Vallee (November 2021) - Students Saving Lives: National Live Update
Television Interview by Host Leslie Roberts, CTV News (August 16, 2021) - Ottawa girl with rare disorder encouraging Ontario students to become stem cell donors
Digital Media by Ted Raymond, CTV News (May 2021) - Hundreds of Patients Like Hillary Need a Stem Cell Donor
Print News by MediaPlanet Canada, Health Insights, featured in MacLeans Magazine (October 2019) - Elmoazzen: Stem cell and cord blood donations can save countless lives
Print Column by The Ottawa Citizen/Postmedia, Dr. Heidi Elmoazzen (August 2, 2019) - ‘This is why we can’t stop:’ Family of girl with rare blood disease driving bone marrow registry
Print News with Video by Ashley Fraser, The Ottawa Citizen/Postmedia’s Joanne Laucius (July 19, 2019) - Would-be bone marrow donors line up to get swabbed to help Ottawa girl
Video by Ottawa Citizen/Postmedia’s Jean Levac (June 26, 2019) - Help Hillary Save Lives, Including Her Own
YouTube Viral Video trending on X/Twitter causing record-breaking event turnout (May 2019)
See also…
- One Step at a Time: Reflections on a Battle with Leukemia
Published Book featuring Hillary McKibbin, Authors Brian Fraser and Callum Fraser (2022) - Education without walls: Some Ottawa families have chosen virtual schools — here’s why
Print News in The Ottawa Citizen/Postmedia by Joanne Laucius (September 2022) - Hillary McKibbin In Remission, Rings CHEO Celebration Bell
Community Print News in Manotick Messenger by Charlie Senack (August 19, 2022) - Pandemic coverage with Hillary McKibbin
Radio Interview on 1310 News with Host Sam Laprade (March 20, 2020) - Hillary on An Hour To Give
Radio Interview on CFRE with Sam Laprade (December 23, 2019) - Part 1 and Part 2 KISS FM 105.3 Radio Interview with Amy Volume (September 2019)
- Hillary’s Wish Trailer / Make-A-Wish & Alexandria Camping Centre
Video Feature by Make-A-Wish Canada - Urgent appeal to find stem cell match (CTV News, June 20, 2019)
- Ottawa girl, 5, with rare blood disease urgently searching for stem cell match (The Loop, June 20, 2019)
- Family of five year old Ottawa girl with fatal disease searching for a bone marrow donor (CFRA Radio, June 20, 2019)
- Family of Ottawa girl with rare blood disease searching for bone marrow match (The Ottawa Citizen/Postmedia, June 24, 2019)
- Hundreds join stem cell registry for Ottawa girl looking for donor (Ottawa Matters, June 24, 2019)
- Can you help Ottawa’s Hillary McKibbin for her 6th birthday? (JUMP 106.9 Radio, June 25, 2019)
- Bone marrow registry to hold second clinic for Hillary after first runs out of cheek swabs (The Ottawa Citizen, Chronicle Herald, Western Star/Postmedia, June 25, 2019)
- Second call to join stem cell registry to help Ottawa girl (Ottawa Matters, June 26, 2019)
- Second, bigger swabbing clinic to be held for Hillary McKibbin July 4 (CTV News, June 26, 2019)
- 630 would-be bone marrow donors line up to get swabbed to help Ottawa girl, and thousands more (Print/Video: The Ottawa Citizen/Postmedia June 26, 2019)
- Second bone marrow testing clinic set up today in Riverside South (Ottawa Matters, July 4, 2019)
- Second Swabbing Clinic Today For Hillary McKibbin (Jewel 98.5 Radio, July 4, 2019)
- City residents once again turn out to show support for Ottawa girl in need of transplant (Ottawa Matters, July 5, 2019)
- Fighting for Hillary (1310 Radio with Mark Sutcliffe, May 2019)
Interview with Mark Sutcliffe, Ottawa Today 1310 News
On behalf of Steve, Kelly, Alyssa, and Hillary McKibbin…thank you for your support. It’s rainbows and unicorns until we manifest a recovery.
A poem by Alyssa McKibbin
I feel like my heart just broke apart.
Hillary is my sister and this is hard on my family.
When I see Hillary in that hospital bed, it makes me think, “How would I feel if that were me?”
But I know that Hillary is a fighter and she’ll never, ever let anything stop her from living her dream.
I know we’ll get through this, because Hillary is the strongest person that I know.
Maybe we can reverse time.
Website designed by me and Hillary using WordPress, with the help of a good friend.