Best days ever
St. Jude patient and 'old soul' Maelin-Kate stays positive and sees beauty everywhere even as she goes through treatment.
October 02, 2020 • 2 min
Megan, Maelin-Kate’s mom, describes her daughter as an “old soul.” But don’t take that to mean she’s the too-serious sort. “She's really funny. She's just super joyful,” Megan said. “She loves everything about life.”
And why wouldn’t she? Her family is large and loving, and, tiny though she is, she’s quickly fallen in step with her four older brothers, who adore their sister and have stood by her, wanting to protect her through the challenges she’s faced.
Life has already been tough for the 6-year-old. Adopted from China, she was brought home by her mom and dad, Paul, and found to have hip dysplasia, which was corrected with surgery, though her lab work came back as abnormal.
They were glad to have a St. Jude Children’s Research Hospital affiliate clinic near their home in Alabama, and were there within a week. But without any family history, Megan said, “We really didn't know what we were looking for. So their plan was just to test a bunch of different things and just figure it out.”
But the treatment plan advanced for Maelin-Kate when her family was introduced to a doctor before leaving the clinic. She was a specialist who had worked with Fanconi anemia in the past, and recognized it right away in Maelin-Kate's blood work.
Fanconi anemia is a very rare genetic blood disorder that prevents bone marrow from making enough new blood cells for the body to work properly. Without a bone marrow transplant, it can lead to leukemia.
Despite such a harrowing diagnosis – without a blood relative, finding a matching donor would be a challenge – Megan said, “Every day, she finds a reason why it's the best day ever.”
And it isn’t the big things in life making her days the best ever; Maelin-Kate finds joy in the smallest ways. “She’ll say, ‘I see a butterfly, it’s the best day ever’ or ‘We ate spaghetti for dinner, it’s the best day ever.’”
It was truly the best day ever when a donor was eventually found and a transplant completed at St. Jude before the Fanconi anemia turned into leukemia.
The family clings to their faith and to the good fortune they’ve had despite the challenges. It’s in the everyday surprises – butterflies and spaghetti dinners – where Maelin-Kate finds happiness, where she finds the smiles that have helped light up the days of her mom, dad and brothers.
