By Charlie Senack, Manotick Messenger
It’s a day that was three years in the making: Eight-year-old Manotick girl Hillary McKibbin is finally in remission and living her best life after a three year battle with rare blood disorders.
Hillary, who was diagnosed with Idiopathic Aplastic Anemia and Paroxysmal Nocturnal Hemoglobinuria in 2019, had the chance to ring CHEO’s celebration bell on June 23. It was an emotional day made possible by hard work, dedication, and support from the community.
“What it means to be in remission is your blood levels are pretty high and pretty normal, and you are pretty healthy overall,” Hillary, 8, told the Manotick Messenger. “Last week I had a blood test and my levels were amazing and really high.”
Hillary is wise beyond her years. She’s had to grow up quickly, dealing with challenges no one should have to face, especially at such a young age. She was only five-years-old when her health started to decline, spending much of her life in and out of hospitals. And because of a weakened immune system, she hasn’t been able to return to in-person school, instead doing her learning online.
Idiopathic acquired aplastic anemia is a rare, life threatening bone marrow failure syndrome characterized by cytopenias and a hypocellular bone marrow, according to the National Library of Medicine. The other blood disorder Hillary faces, Paroxysmal Nocturnal Hemoglobinuria, is characterized by destruction of red blood cells, blood clots, and impaired bone marrow function. Both diseases are closely related.
But despite her challenges, Hillary is one of the most positive kids you could ever meet. She understands the significance of what she’s overcome, and is looking to use her story as a way of helping others.
“It’s important to donate blood because there’s a lot of people around the world who are suffering right now and don’t have much blood just like me,” she said. “Not many people are donating right now — it’s 30 per cent less — so just give blood and know that you are helping millions around the world right now, making them have a better day, and giving them a chance to live.”
This is the first summer in a long time Hillary can be a ‘normal’ kid. But rising COVID-19 levels means she needs to take enhanced protections to protect her weakened immune system. Even so, her family is doing everything they can to provide a sense of normalcy.
“Most of the summers of my life have not been that great, but this summer I feel like is going to be the best summer of my life. It definitely is a privilege and I really am excited about all of the adventures coming,” said Hillary.
“My old friend from Kindergarten, her mom invited us over to her house and they have a trampoline and pool, and we have been going there often,” she added. “The pool is going to be ready in a couple of days I think and it is going to be a really good summer where I can go out a little more.”
Kelly McKibbin, Hillary’s mom, said it’s moments like that she cherishes most. The family has shared their three year journey on social media, where they have picked up a large presence of supporters and well wishers. Kelly says she’s so proud of Hillary for what she’s had to overcome, and becomes emotional when speaking about their journey.
“We are so relieved every three months when we get that blood work that says Hillary is stable and does not need a blood transfusion. I can’t believe that is our reality but it is,” she said. “We did not share all the dark hard parts like drinking peg three times a day, vomiting all day, bone pain for two years; debilitating bone pain which made Hillary bed ridden, but we didn’t share all that. We shared the photos of her sun tanning in the backyard or her playing because we needed that hope too and I really think Hillary has succeeded.”
When Hillary got to ring CHEO’s celebration bell, she wasn’t just thinking of herself. She’s one of the lucky ones. Many of her friends are still fighting rare blood diseases, some have unfortunately finished their fight.
“I think one of the hardest parts was when Hillary pulled me aside just before ringing the bell and asked if she could change her speech a bit because she wanted to add a little ring for a little boy named Maverick, who died from Aplastic Anemia,” Kelly said. “It just really hit home how much Hillary thinks about her friends and those we have lost to this terrible disease.”
For Hillary it was a day of feeling fortunate for the privilege of life she now has, a chance to live like a kid.
“That was probably one of the best days of my life,” she said. “I am very privileged to be able to get that moment and be ok and in remission, happy and healthy, and alive actually.”
Hillary said she’s feeling great, but still gets tired easily. She’s enjoying the rare treat of eating McDonalds and spending time outside.
For Hillary’s parents, they have had to make personal sacrifices to keep their family safe. The rising level of COVID-19 infections with almost no restrictions in place means they have to miss out on many opportunities, but they know at the end of the day, keeping their family safe and healthy is the most important thing they can do.
“We lose a bit of privilege every day,” said Kelly. “Steven, my husband, and I both gave up our careers — we have six degrees between us — and we both had to leave our careers to change to a virtual lifestyle. We have some accessibility issues that we have to work through every day. It does take up a lot of time, but where else are we going to go?”
While Hillary’s health is on the bend, they aren’t giving up their advocacy work. About one in seven people who enter a hospital require blood, and one pint of blood can save up to three lives. But there has been a shortage of people rolling up their sleeves to save a life, made worse by the pandemic.
World-wide, roughly 18,000 people are seeking a blood match — over 800 of those patients are in Canada alone.
Hillary wants to thank all of the doctors and nurses who have helped her over the years — too many to name — and for all the residents across Ottawa who have lifted her spirits throughout the dark times and good times.
They also encourage people to join the World Marrow Donor Association Registry.
“I just want to say thank you to everybody so much for being there through my journey and others, and for donating blood which helps millions of people like me. But we still need blood and stem cells – we also need those,” she said. “It is a simple thing and safe to do. Give blood and get swabbed because it helps millions around the world and it saves people.”