A shy smile crossed Maggie Rose Montez’s face on a Tuesday night in her family’s Boynton Beach living room as she pushed strands from her black and sea green ombre wig away from her eyes.
Her sister, Abigail, says Maggie Rose’s wigs are like mood rings. And this one?
“This is the one she wears when she’s nervous,” Abigail explained.
In her 15 years of life, Maggie Rose has had many moments of anxiety and fear.
As an infant she was diagnosed with asthma. Then came the diagnosis, at age 3, of failure to thrive, which brought with it the feeding tube she will need for the rest of her life.
But the worst was yet to come. Maggie’s parents soon learned she has dyskeratosis congenita, a rare progressive bone marrow failure syndrome that makes her more susceptible to other cancers and pulmonary illnesses. Doctors found a lump in Maggie’s throat when she was 6 and removed half her thyroid, then removed the other half several years later after she was diagnosed with thyroid cancer.
The illness caused a skin condition that scarred parts of her body, and the thyroid cancer caused her hair to fall out.
This month, she underwent a series of tests to determine whether her cancer has spread or her bone marrow is failing. Doctors found two troubling areas of tissue in her abdomen that they are now analyzing to see if they are cancerous.
“There was a point, a few months ago, where she just broke down and gave up. She didn’t want the doctors, the pills, the treatments, she didn’t want to do any of it anymore,” her mother, Rosanna Montez, said. “We all talked to her, and her grandmother talked to her and encouraged her to keep going, and after a while she was okay.”
Because her daughter requires round-the-clock care, Rosanna Montez cannot work and stays home to home-school Maggie Rose and take her to and from doctor’s appointments in the family’s nearly 20-year-old SUV. Her father, Oscar Montez, works as a custodian at a nearby elementary school and is the sole full-time provider for Maggie and her six siblings.
But where health is fragile and finances thin, in this house, love abounds.
It’s in the tears that Maggie Rose’s little brother, Arturo, cries when he confesses he’s scared about the results of Maggie’s upcoming tests. It’s in the laughter that brother Gabriel, the practical joker of the family, gets from his brothers and sisters when he hides in different parts of their small Section 8 home before he jumps out to scare them.
It was in her 20-year-old sister Esmeralda’s decision to drop out of college and put her dreams of becoming a preschool teacher on hold to find work to help support her household. Maggie’s 19-year-old sister Ambrosia, who dreams of being an obstetrician, and 22-year-old brother, Oscar Michael, work as well.
After Maggie Rose’s father shaved her head as she was losing her hair, Oscar Michael went online, picked out and paid for a wig for his little sister. It was a long mane of bright red hair, just like his sister’s favorite Disney character, Ariel from “The Little Mermaid.”
And after a tough day of doctor visits and treatments, Abigail, her closest sibling, shares the latest teen dramas from her life as a middle school student, and the two girls talk about Maggie Rose’s love of the Pittsburgh Steelers and all things Justin Bieber.
“I like all his songs,” Maggie Rose said of the pop star, throwing a pillow at her brother Gabriel when he laughed and rolled his eyes. “I really want to go to one of his concerts one day.”
MAGGIE ROSE’S WISH:
Maggie Rose Montez, 15, suffers from multiple medical conditions, including thyroid cancer and dyskeratosis congenita, a progressive bone marrow failure syndrome that leaves her more susceptible to other cancers and pulmonary illnesses. The sole full-time financial provider for her and her six siblings is her father Oscar, who works as a custodian for the Palm Beach County School District. Her mother, Rosanna, is unable to work because Maggie Rose requires round-the-clock care and must often travel to Miami and other nearby cities for treatment. The family of nine lives together in a small apartment, where some of Maggie’s siblings sleep on air mattresses and squeeze their clothes into Tupperware bins because dressers that would maximize their cramped space is a luxury they can’t afford. The family’s chief form of transportation is an old SUV that is constantly breaking down and was recently inoperable for two months because they couldn’t afford to fix it. The family could use a newer car, furniture and bedding and other operational supplies. In addition, Maggie Rose, a Justin Bieber fan, would like to learn to play the guitar. Her dream is to go on a trip with her family to New York City.
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