Meet Avery
Michelle Jones’ son Avery received a lifesaving stem cell transplantation from Avery’s sister Gabrielle. While Avery had a fully matched donor within his family, most patients do not and rely on an altruistic stranger to save their lives. Patients are also more likely to find a match from within their own ancestral group, and, since, Black People of African and Caribbean descent are underrepresented as donors, it is much harder for Black patients to find a match. Avery also received many lifesaving blood transfusions from many donors. Avery’s family urges those from the Black community as well as those with ethnically diverse backgrounds to become blood donors, and to reach out to their local registry and become a stem cell donor. Canadians can sign up as blood, stem cell, or organ & tissue donors at blood.ca
Part 1: “They didn’t know what was wrong”
“Avery was born in November, healthy and strong; our biggest baby of the four. But by March, at just four months old, he became sick with a fever that just wouldn’t go away. After several visits to a pediatrician and the hospital, we were told that the cause of Avery’s prolonged fever couldn’t be determined but based on blood tests, they had determined that he was very sick and needed to be immediately sent to the Hospital for Sick Children. Avery and I were rushed to Sick Kids by ambulance. When we got to the hospital, I remember one distinct moment where I had to leave the room because it was so hard to hear him cry as they conducted their tests and took blood from him. We quickly learned that there was an issue with his white blood cell count and that if we had waited any longer to get to the hospital, he could have died. Avery was admitted to the hospital at that point and there began the wait to determine what was wrong with our son. After several long days, Avery’s hematologist informed us that Avery had a rare genetic disease called HLH and that the only cure for it was a bone marrow transplant.”
Part 2: Search for a donor
“Avery had this rare genetic disease that operated almost like cancer, and because of it, he needed a stem cell transplant. We were told that the number of Black people on the current donor list was very small, and we would likely have to do drives, and things to get our community involved to find a suitable donor. But before we got to that point, we were told to first look within our family. While Stefan and I probably wouldn’t be a match for our child because we only have half of his genetic makeup, one of his siblings could potentially be a match. I’ve always been happy having the number of kids that I do, but in that moment, I was definitely more happy that there was not just one, not just two, but three siblings that could be a possible match for Avery! Stefan and I had to explain to our kids who were two, four and six at the time, that their brother was very sick and the doctor had to take their blood and test it to find out if one of them could help Avery.”
Part 3: Birthday miracle
“I was starting to get myself prepared for the fact that if we don’t find a donor within the family, I would go hard and do whatever it takes to get everybody that I know that’s Black and everybody that I don’t know to get on the stem cell donor registry. In April, Stefan, myself and our other three children went to the hospital for genetic testing to see if one of us were a match for Avery. Over a month later, we found out that there was a 10/10 match within our family! Gabrielle, who was 2-years old at the time, was a perfect match for him. That moment was especially memorable as we received the news on my birthday. Best. Birthday gift. Ever!”
Part 4: Special at a young age
“We were worried about our 2-year old, Gabrielle, donating stem cells to Avery and what this would mean for her. We worried about how invasive it would be and if she would be harmed or affected in any way. However, still knowing that one child was going to save the other was a huge relief. It was very comforting but also scary at the same time. Gabrielle was a soldier. She didn’t donate her stem cells through the blood donation method – they took a sample from her hip. There were three spots on her back where they had to go into her hip bone. She still has the love mark to prove it. Gabrielle did not express or show any pain or discomfort from the procedure. In fact, she was skipping out of the hospital that very evening! Even in the weeks following, she never complained or any pain. She made the situation a lot easier from a parent’s standpoint. She is special just in that even at a young age, she was aware of what she was doing and was determined to help her brother.
Part 5: “I’m here to save my brother!”
“In the waiting room before her donation procedure, our daughter Gabrielle was so brave. I recall going into the operating room with Gabrielle, she was happy, smiley and bubbly. She got up on the step stool in front of all of the doctors and nurses, and announced: “I’m here to save my brother!” Everyone stopped what they were doing. They looked at me and I started to cry because it was amazing to see that she wasn’t scared at that moment. It was very touching. It was hard, but reassuring that she was so confident and ready to help.”
Part 6: Immense bravery
“The special moment for me was how brave Gabrielle was. It was her strength and attitude that helped us manage, because if she had been crying, we would have been a mess. I remember we took a short video after the procedure. She was dopey eyed and told Avery that he was going to get his blood soon. She said: “We did it, I love you”. She is definitely a trooper. Being that young and doing a bone marrow transplant was incredible. If Avery needed another stem cell transplant now, almost six years later, she’s told us she would do it again.”
Part 7: Rallying the community
“Just over a year after the anniversary of Avery’s bone marrow transplant, we decided to run a donor drive to create awareness within our community and to help those waiting for this life-saving treatment. The support we got from our local church, strangers, Canadian Blood Services, Sick Kids, friends and family was amazing. We tried to get information out there because there is a definite lack of education and awareness. I don’t think people really understand that getting on the registry is literally a swab on the inside of your cheek. That’s it. That’s all you need to do. There are no needles involved. This is the message that needs to be shared. So many people at the drive were like, ‘Woww! That’s so easy.’ We had a very successful donor drive – over 70 people registered that day, and it was amazing.”
Part 8: Lessons learned
“Through this process, there are two big lessons that I learned. One: Avery had so many blood transfusions in the hospital, and if people weren’t donating blood, we wouldn’t know what would have happened. We saw bags roll in and wondered where all of this blood was coming from. We thank those people for their commitment to helping. This is something that stood out; the fact that somebody had to sit there to give blood to save a life. The second major lesson that I learned was the importance of community. Whether it is an Asian community, South Asian community or Black community, members can share a similar gene pool or certain make up. Having a pool to search from allows members of a community to help other members.”
Part 9: I wouldn’t be here if she didn’t save my life
Avery still carries the illness but doesn’t suffer from it because of the bone marrow transplant. While he has been very healthy since then and has led a normal life, there is no guarantee that one day he wouldn’t need Gabrielle’s stem cells again. Gabrielle is now eight and has heard many times over how she saved her brother’s life. If you were to ask her now, she will tell you that she would donate her bone marrow again in a minute. Avery is six, in grade one and is full of life. If you saw him, you would never know that he was sick a day in his life. Out of all of our kids, he has the most energy. We’re still trying to tell him about his story. We show him the pictures of when he was in the hospital and those of him receiving the transplant at seven months old. He doesn’t quite get it yet but at some point it’s going to click for him and he’ll realize, “Hey, I wouldn’t be here, if Gabrielle didn’t save my life.