When Megan and her husband first held their daughter Amelia, they knew she was extraordinary. To them she was simply “AJ,” their tiny Valentine, born on February 15, 2024.
From her earliest days, AJ had a way of capturing hearts. Strangers would stop in grocery stores and restaurants just to marvel at her beauty and spirit. “People would tell us, ‘Your baby is perfect, your baby is gorgeous,’” Megan recalls. “There has always been something angelic about her.”
But in December of 2024, just one week before Christmas, the Wilson family received news that shattered their world. Genetic testing revealed that AJ carries a mutation in the SURF1 gene, confirming she has Leigh syndrome, a rare and fatal mitochondrial disease that attacks the brain and nervous system.
“We were expecting answers about why she was so small, maybe dwarfism or a food processing issue,” Megan explains. “We never imagined hearing that our baby had a terminal diagnosis. We sat together that night and just cried. It was the worst moment of our lives.”
Families who live with Leigh syndrome or mitochondrial disease know too well the weight that comes with a diagnosis. It’s not just medical language. It is the loss of milestones you dreamed of, the uncertainty of tomorrow, and the grief that comes before loss has even arrived. For Megan, hearing those words was not just about understanding a condition. It was about stepping into an entirely new way of living.“This grief is unlike anything I have ever known,” she says. “It is anticipatory grief. We do not know how long we have with AJ. But what we do know is that she is here today, she is thriving, and she is teaching us to slow down and love more deeply than we ever thought possible.”
After the diagnosis, Megan quit her job completely. Overnight, the family’s income was cut in half. Her husband worked from home, so they moved in with Megan’s mother. “We are so blessed that she had enough room for us,” Megan says. “We are comfortable here, and we are lucky to have something to fall back on.”
Megan remembers going back to work as a hairstylist for one day in January, the month after AJ’s diagnosis. When she got home that day, it hit her: she had left her baby, a child whose time is uncertain, to do someone’s hair. “It broke me,” she admits. “I felt like I had chosen other people over her.” It took nine long months for her to begin making peace with that feeling. Her mother’s words stayed with her. “You’ll know when you’re ready. You’ll know when it’s time.” Slowly, Megan began to accept that her work could bend around AJ’s needs. Unlike many parents tethered to jobs for insurance or benefits, Megan’s job carries this rare gift of flexibility.
Her husband provides their insurance, though the weight of that responsibility is heavy on him. “I know how much he carries,” she says softly. “And I am so grateful.”
To help ease the financial strain, Megan also began painting banners. What started as a way to bring in a little extra income quickly became something more. “I love it,” she explains. “It’s therapeutic. AJ will sit next to me and play with paintbrushes while I work, and it is wonderful. It gives me peace, and it gives us both joy.”
At just 18 months old, AJ is a bundle of personality. “She is sassy, opinionated, and sweet,” Megan says with a smile. “She has the kind of energy that makes people stop and pay attention.” AJ loves her two giant dogs, Kona and Moose, splashing in the pool, eating just about anything, and snuggling with her favorite Llama Llama toy. She is a social butterfly who never meets a stranger. “She will wave and shout ‘hi’ until someone responds,” Megan laughs. “Even if it were a rainbow alien, AJ would make a new friend.”
Despite her diagnosis, AJ continues to surprise everyone. She recently began crawling short distances and even stood on her own for a few seconds during physical therapy. “I cried,” Megan admits. “We had let go of expectations like walking or crawling, because we would be heartbroken if they never came. So to see her defy the odds brings overwhelming joy.”
For the Wilson family, each day with AJ is both a gift and a reminder. The uncertainty of Leigh syndrome looms over them, yet they refuse to let fear steal their time together. “We made a choice after that first week of devastation,” Megan shares. “Who are we to sit around grieving her life when she is sitting in front of us laughing? She is perfect right now. We cannot waste these moments.”
That choice has changed the rhythm of their lives. They celebrate small things. They dance in the rain. They linger in moments that might otherwise be rushed. “AJ has slowed us down for the better,” Megan says. “She shows us every day that joy is in the little things.”
“Doctors do not know why or how AJ is doing so well right now,” Megan adds. “But we are grateful for every single day. We want to keep making memories with her. And we want more families to have that chance, too.”
