Alayna Numbers looks like your typical, healthy and active 5-year-old with curly brown locks, lots of energy and an infectious smile that belies her recent battle with aplastic anemia, a rare condition where the body stops producing new blood cells, and if left untreated, can be fatal.
While 2020 introduced social distancing and wearing masks for the rest of us, Alayna was already a pro at both. On Sept. 24, 2019 Alayna received a lifesaving bone marrow transplant with marrow harvested from her then 18-month-old brother Mikey.
After being discharged home in late December, Alayna’s parents prepared for the yearlong recovery that meant keeping her isolated to help prevent exposure to infections.
“Alayna had the immune system of a newborn baby,” said her mom, Ashley. “She had to receive all of her childhood vaccinations again after the transplant, although she has to wait 2 years to receive live vaccines like chickenpox or MMR.”
Trips outside the house were limited and Alayna always wore a mask.
“She used to feel singled out and had people staring at her for wearing a mask,” said Ashley. “When COVID hit in early 2020 and everyone started wearing masks, it helped normalize it. Now she likes to correct people who aren’t wearing their masks properly!”
Quarantining was nothing new to Alayna, or her little brother.
“Even though Mikey is only 3, most of his life has been spent quarantining with his sister,” said Ashley. “It was really nice when summer came, and we could do things outdoors again.”
In fall 2020 Alayna hit a few big milestones. For one, she started preschool and currently attends 3 days a week. And, on Sept. 24, she and Mikey celebrated “rebirth” day to mark their one-year post transplant anniversary date.
“We celebrated with a trip to the Outer Banks where we swam, played on the beach and collected rocks and seashells,” said Ashley.
Alayna goes back to the hospital every few months for checkups with her team that includes Courtney Culbertson, pediatric nurse practitioner and stem cell transplant program coordinator, and Dr. John Fargo, pediatric hematologist/oncologist.
Feeling like she could breathe a sigh of relief as Alayna’s recovery progressed, Ashley revisited the journals she kept during Alayna’s ordeal.
“I kept journals because it was a good way for me to vent,” said Ashley. “Also, with Alayna being so young I wanted something for her to be able to look back on to reference this time in her life.”
Ashley says rereading them made her remember what a dark and scary place her family was in and gave her an idea for how to turn her words into something useful for others.
“I wanted to figure out a way I could give others hope that there is a light at the end of the tunnel,” she said. “I decided to self-publish a book called “AlaynaStrong: An Unexpected Journey through Aplastic Anemia” to chronicle what I had learned in the hope of helping other families on their journey with aplastic anemia.”
When a local newspaper ran an article on the family, other parents began reaching out.
“We connected with a family in Akron with a child who was recently diagnosed,” said Ashley. “It’s been nice to be a sounding board and resource for others because holding in all your worries and fears breaks you down. I try to encourage people to celebrate every victory, no matter how small.”
That same attitude of wanting to help others inspired Ashley to sell candles to benefit Project Ed Bear (a Northeast Ohio nonprofit that provides comforts and needs to children suffering from cancer) during an Aplastic Anemia Awareness Campaign she called “Spread the Hope.”
“Alayna’s favorite color is purple, so we had purple and turquoise cupcake-scented candles that we called Cupcakes and Sass,” said Ashley. “We raised $720.”
One of things Alayna and her family had been anxiously awaiting was the fulfillment of her Make-A-Wish dream vacation to Disney, but COVID closed down the parks.
“Make-A-Wish said we could wait until it was safe to travel or she could make another wish,” said Ashley. “I told Alayna we could visit Disney on our own after restrictions were lifted.”
Rather than a one-time trip, many Make-A-Wish kids are reimagining their wishes into longer term gifts like gaming systems and playhouses. Ashley says the wish Alayna finally came up with was inspired by her favorite cartoon characters, Max and Ruby.
“Alayna watched an episode where Max and Ruby went camping and then she proceeded to pretend she was camping for an entire weekend,” said Ashley. “When I mentioned she could ask Make-A-Wish for a travel camper that she could keep forever, she loved the idea. She even asked if it could be purple.”
Right before Christmas, the family received a Crossroads Zinger Travel Trailer sporting a bunk bed with purple sheets. With room for 6, the family of 4 hopes to plan their first outing in the near future.
“Alayna is fascinated by gemstones,” said Ashley. “There’s a Yogi Bear’s Jellystone Park in Pennsylvania where they have gemstone mining so that may be our first trip.”
In between her road trips, Alayna will continue to be seen by her medical team, including the hospital’s multidisciplinary Survivorship Clinic where they will monitor for late effects that can happen secondary to chemotherapy.
While Alayna was fortunate that her brother was a perfect bone marrow match, not everyone is so lucky. National bone marrow registries, which rely on people to voluntarily register themselves by submitting a cheek swab, allow people to be matched with someone in need. To learn more about how you could be a cure for someone else, visit bethematch.org.