Macayla’s story

Written by Aimee, Macayla’s Mom, and Haley Welch, volunteer

Meet Macayla. She’s seven years old, and she’s from Phoenix, Arizona.

Ever since she was a baby, Macayla constantly got infections. She suffered through several bouts of sinus infection, bacterial infection, upper respiratory infection, pneumonia, unexplained fevers – a list that most children her age barely encounter one part of. She’s also had to battle many strains of the flu during the past three years, often several within the same flu season.

For a while, doctors prescribed antibiotics for her. Sometimes they would work, but other times Macayla would just end up back in the emergency department. Finally, when a neurologist decided to run a Complete Blood Count test in addition to her standard genetic test, something interesting was revealed – Macayla’s white blood cell count was significantly lower than normal, and she had anemia. She was quickly referred to a hematologist.

The first hematologist was not quite the push in the right direction that the family needed. The hematologist often resorted to just pulling labs every few months. Furthermore, Macayla’s allergist caught a hidden bacterial infection, but ended up prescribing the incorrect antibiotics after conducting a CT scan of her sinuses. Needless to say, it was a heart-wrenching battle to try to get medical personnel in the emergency room to understand that there was something more going on.

Macayla was finally given a correct diagnosis in early 2019. Her family began to meet with a new hematologist who took blood draws twice a week for six weeks. This was enough to give the doctor accurate data, and Macayla was diagnosed with congenital neutropenia.

Macayla’s family was eager to work on a treatment plan after getting a clear picture of what she was going through. Macayla gets Neupogen G-CSF injections to stimulate the body’s production of white blood cells. The injections had to go through a period of calibration to find the sweet spot of dosage and timing, which turned out to be 20 micrograms of 480 Neupogen G-CSF on Mondays, Wednesdays, and Fridays.

Outside of the injections, Macayla’s family helps her well-being in many other ways. She gets extra rest, exercises a healthy amount, and follows a diet that supports her body’s needs. Her family also uses two homemade remedies to boost her immune system: elderberry and orange peels. She is kept away from friends and family who are sick. When other kids are sick on the school bus, Macayla’s family will take her into school themselves. They make sure she has vaccinations, including the flu shot. And on days where Macayla feels particularly run down or deprived of any energy, her family has her stay home from school. The day of rest usually helps her mind and body reboot.

Now that He runny noses. This helps them prepare.

For Macayla, the biggest adjustment has been having her mom give her injections. She now cooperates well and is willing to offer her arm even through tears. Once the injection is over, she goes right back to playing as if nothing happened. Having the gift of an accurate diagnosis does wonders to help her, her family, and others understand her condition.

While stay-at-home orders remain in place across the United States, Macayla’s family has come across a pleasant finding – Macayla’s overall wellness has increased. Her family shares that it has almost been like a “reset” period for her immune system. She still gets injections as normal, but she doesn’t get sick nearly as often because she is exposed to less.

Throughout the journey, Macayla’s family has learned to advocate for monitoring and admission. Macayla remains resilient and does not change her positive perspective, despite having two rare conditions. Overall, the family has a growing appreciation of the little things and the small victories. At such a young age, Macayla already stands as a strong role model for those who face neutropenia.

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