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In just 13 months, Mia embodied a lifetime’s worth of love. Her heart of gold shined through in her sweet, sassy and curious personality. She loved to play with other children and animals, especially Martin, her kitten. Whether she was dropping everything to dance to the theme song of her favorite cartoon or riding her pink unicorn throughout the house, Mia could light up any room. She may not have been able to say many words, but Mia had a lot to say whenever anyone tried to read to her.
For a while, Mia was perfectly healthy. She passed every wellness visit with flying colors and joyfully celebrated every milestone until Thanksgiving 2020. While Mia’s grandmother – a registered nurse – was bathing her, she noticed a strange new texture on her granddaughter’s cheek. Touching it irritated the skin and caused the surface to swell. Mia’s pediatrician thought it was the result of a virus, but after two unhelpful antibiotics, they needed more information. After a trip to the children’s emergency room in Omaha, Nebraska, a CT scan and biopsy revealed a mass in her cheek, and she was diagnosed with neuroblastoma.
The primary tumor began in her left adrenal gland, but she had spots on her lungs and cheek. Mia’s family was shocked – she displayed no symptoms leading up to the diagnosis, but her neuroblastoma was stage IV high-risk and N-Myc amplified. Not even two weeks later, she enrolled in the ANBL 1531 study and handled her first two chemotherapy treatments like a champ. A couple of days later, she awoke to have her milk and watch TV like any other day.
Sadly, her health took an unexpected turn, and Mia passed away from cardiac arrest.
Mia will forever be her family’s hero because she was everything they strive to be. She was a pure soul whose selflessness and care for others taught them the true meaning of unconditional love. In her short life, she inspired everyone who knew her to live life to the fullest, love those around you a little more every day, and never take a single day for granted.
Mia’s mom, Sydney, feels for any family experiencing such a profound loss. She acknowledges that it is unfair and realizes that there is no justification. It can feel so confusing why the world doesn’t stop with you. Sydney has learned that grief is a result of great love, and you can keep that love alive in their memory. She urges others to continually speak of their loved ones, never letting a day pass without mentioning them. “Say their name bravely,” she says.
Her family is left with many dreams for a future with safer treatment options and more cures with the help of foundations like Alex’s Lemonade Stand Foundation (ALSF). They are appalled that these kids only receive 4% of the nation’s budget for cancer research. Childhood cancer is not as rare as they once thought, and the fact that one in 285 children are diagnosed with cancer by the age of 19 makes this disparity unacceptable.
Mia’s family intends on continuing to tell her story with the hopes of creating a better future for other children with cancer. In this way, her legacy will live on. Mia’s family knows that her life had meaning, and even though she is no longer here, she will move mountains.
Information provided by Sydney Pontius-Maynes, Mia's mom
Updated July, 2022
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