Start With Hillary
Follow six-year-old Hillary McKibbin in Ottawa, Canada in her fight against a rare blood disorder, Aplastic Anemia. Help increase awareness for people all over the world to join the global stem cell registry. It’s time to give everyone an equal chance at benefitting from a life-saving bone marrow transplant. Everyone deserves a match. Let’s #StartWithHillary.
Hillary’s story – The beginning
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.
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.
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 news
- ‘This is why we can’t stop:’ Family of girl with rare blood disease driving bone marrow registry (with video, Ottawa Citizen, July 18, 2019)
- Urgent appeal to find stem cell match (CTV News video, 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 (Audio interview, CFRA News Talk Radio, June 20, 2019)
- Family of Ottawa girl with rare blood disease searching for bone marrow match (Ottawa Citizen, 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 (Ottawa Citizen, Chronicle Herald, Western Star, 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 (Ottawa Citizen with video, 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)
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.
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