Her fifth “second birthday”
Hayleigh Stals was diagnosed with Fanconi Anaemia in January 2017 at the age of 7. The SABMR immediately began a donor search, and it wasn’t long after that her lifesaving match was found. It was a Friday when Hayleigh’s parents received the call from SABMR notifying them of the match. “It’s a call you never forget,” her mother Marlene says. What a blessing that Hayleigh’s donor was found so quickly! Time is a critical component of bone marrow transplants–and often, patients pass away who have to wait too long to find a donor. The more donors we have means that we can find more patients their donors faster and save more lives–so if you aren’t registered as a bone marrow donor, click Become a Donor above to get started!
Marlene and Hayleigh went to Cape Town for the transplant while Hayleigh’s father stayed at home in East London with her two-year-old sister. Hayleigh’s transplant physician was Professor Nicolas Novitzky. Marlene calls Professor Novitzky and his team “amazing”.
The outpouring of support from the community was surreal for the whole family. “When she got sick, people said, ‘Just tell us what we need to do and we’ll do it.’ Many friends registered,” Marlene says. “It was an overwhelming response of, ‘We want to help and now that we understand how donating works, it’s not so bad.’” Want to know what the donation process includes? Check out the info box on the right for more information!
Marlene says that other families in the hospital became a part of her own family while they prepared for and underwent Hayleigh’s transplant. “We made a lot of friends in that community, people whose children also needed a transplant. It’s a bond that you’ll always share. Someone can phone you and say their child’s blood count was low. You understand what that means.”
The transplant was a scary time for Hayleigh and her family, and they clung to their faith that it would be a success. “That’s all you have at the end of the day. Your medical team and God,” Marlene says.
Now, Hayleigh is in Grade 6, and Marlene says she is thriving, riding her bike and colouring often. Her little sister Mikaylah is now seven years old, and Marlene calls them “inseparable.” The family often goes for walks together after work and school, enjoying the time they have together. “If there’s one thing we’ve learned from this process,” Marlene reflects, “it’s that your family can be taken away from you so quickly and unexpectedly and your world can turn upside down in a blink of an eye. It’s one of those things that you never think will happen to you until it does.”
Marlene takes photos almost every day of Hayleigh and her sister, “because that’s all you have one day when they’re not there anymore,” she says. It’s a strange paradox that how fragile life is makes it feel that much more beautiful and worth living, and often the families who have experienced medical journeys where a loved one’s life was in danger are able to find even more joy in the simple things, like spending time together. Every life is a miracle–and thanks to Hayleigh’s donor, Hayleigh and her family get more years together to experience all the simple joys life has to offer. Thank you, donor!
Marlene keeps in touch with the Registry staff, often sending pictures of Hayleigh as she grows up. “You look at her photos from her birthday four years ago versus now, and you think, ‘Oh wow, that was a little girl and we now have a young lady.’”
The family recently requested forms from the Registry to request a donor meeting, now that the three-year confidentiality period has passed. Marlene calls the process a nerve-wracking one. “There’s this person that did this amazing thing for our child and how do you even start to thank them?”
Hayleigh still goes in for blood counts every six months, but she’s healthy and happy. Every year on her transplant anniversary, her family celebrates her “second birthday,” when they shower her with cupcakes and balloons. “It’s always going to be an important day for us,” Marlene says. “It’s the day when she got a shot at a second chance.”
Hayleigh, it is a privilege for all of us here at the Registry to watch you grow and thrive. We wish you all the best and will always consider you as part of the SABMR family.
Readers, please stay on our social media pages for more stories. Bye for now!
THEMBETEE
What is donating bone marrow really like?
It’s a widely held misconception that the bone marrow donation process is painful, invasive, and may cause permanent damage to the donor’s body. But a lot has changed about the process in the last few decades that makes donating easier, faster, and virtually painless for donors.
Today, most donors donate through a process called peripheral blood stem cell collection (PBSC), which is a virtually painless process completed in about six hours at a private, specialist centre dedicated to bone marrow transplants. PBSC is nonsurgical, non-anaesthetic, and is done exclusively through the blood, similar to donating platelets. While donating, most donors end up watching television, working remotely, playing on their phones, or even taking a nap.
By donating, you are not putting yourself at increased risk of illness. You are only donating extra cells your body doesn’t need, produced by an injection before you donate. After donating, you are back to feeling normal in a day or so and your body will continue to produce healthy blood.
Only on rare occasions are donors asked to donate via the hip bone, usually when the patient is a very young child. This does require an operation, but donors don’t have to agree to it if they’re uncomfortable.
For more stories like this, click here to view our special edition 30th anniversary magazine
