12 Days: 8-year-old's brittle bones plague her, her mother

ALTO BONITO — Aissa Thaily hears the cracking sound at least twice a year.

Each one signals the snapping of the 8-year-old’s fragile bones.

Aissa has had 12 fractures in her short life.

The most recent one occurred when she pulled her backpack from the back of her wheelchair while at school.

The first one was when she was just 18 months old. Her mother, Maria Cruz Garay, was walking, holding her then toddler’s little hand. Aissa stepped on her own shoelace, tripped and fell on her knees.

“It was a minor fall, but after that she didn’t stop crying,” Garay said in Spanish.

Garay took her daughter to the doctor and confirmed Aissa had fractured both femurs. At 1 1/2 years old, when children start to walk and move around to discover the wonders of the world, Aissa had both her legs in casts. She was physically unable to walk during her convalescence, but her injuries also hurt her self-confidence in her ability to toddle about like her peers.

After that incident, Garay learned her daughter has a genetic disorder called osteogenesis imperfecta, also known as “brittle bone disease.”

The girl’s bones are so fragile that they can break for no apparent reason.

In addition to fragile bones, the disorder can also cause weak muscles, brittle teeth, a curved spine and hearing loss. Individuals with osteogenesis imperfecta may have just a few or as many as several hundred fractures in a lifetime, according to the National Institutes of Health. There is no cure, but symptoms can be managed with treatments that include exercise, pain medicine, physical therapy, wheelchairs, braces and surgery.

Since Aissa’s diagnosis, mother and daughter have been on a difficult journey to raise the little girl’s quality of life to the highest level possible.

After so many fractures, though, Aissa is simply afraid to walk.

Only in the water, when she is in therapy, can she play and be rough — or at least as rough as the water lets her be.

Out of the water, Aissa keeps to her wheelchair. At Alto Bonito Elementary, where she is a second-grader, she likes to go out on recess and watch her classmates play. But as much as she enjoys watching them, she wishes that she, too, could sprint across the playground.

Aissa’s body is vulnerable, but the little girl possesses a powerful intellect and she does well academically.

When she needs to use the restroom at school, the teacher asks two of her classmates to accompany her to the nurse’s office — one student to open the door for her and the other to push her wheelchair.

Garay’s eyes fill with tears when she talks about her only daughter’s quality of life. She longs for Aissa’s condition to improve.

Due to the fractures, Aissa has developed a condition where she can’t completely extend her leg, said her therapist Dennis Houghton.

“First (we have to work on) her confidence because of what she’s gone through,” Houghton said.

The mother and daughter live in a very small house in Alto Bonito, east of Rio Grande City. The home can’t accommodate even a small wheelchair like the one Aissa uses. Getting the wheelchair into the bathroom, for example, is out of the question.

Aissa doesn’t get out and about in the community — the family doesn’t have a car — and her dirt backyard, unfriendly terrain for a wheelchair, is an unwelcoming play area.

She wishes more friends could come and visit and play with her. Sometimes she just gazes out her front door.

Garay can’t work. She needs to take care of her little one. Her husband is in Mexico, unable to come and help.

Medicare covers the only treatment Aissa receives: her twice-a-week therapy. Her mood brightens there. In the water, she is free.

Garay has to get help to transport her daughter. The ride on the school bus is too rough for her brittle bones.

The mother manages to get Aissa to and from APTUS Therapy Services, an outpatient center in Rio Grande City.

Still, it’s a difficult situation and Garay sometimes falls into despair.

“But (Aissa) is the one who cheers me up,” the mother said.

“When she is about to go into surgery (every one of her fractures has required it), I see her very brave,” Garay said. “Once I see her like that, it raises my spirits.”

Mother and daughter pray together through the difficult times.

“I ask God to forgive me for complaining about this situation, but I have to endure what he has assigned me,” the mother said.

Garay is always worried that she will get a call from school with bad news.

“It’s a continuous anguish,” she said.

The mother still doesn’t know much about her daughter’s disease. But she knows that she can grow into adulthood, and so the two of them plan Aissa’s future.

The little girl recently told her therapist that she wanted to become a therapist, too. She’s like that, the way she emulates the people who help her, aspiring to do what they do, even if it means abrupt changes in her career plans.

One week she wants to be a therapist. The next week she has a new dream:

“I want to be a teacher.”

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Martha L. Hernández covers Mission, western Hidalgo County and general assignments for The Monitor. She can be reached at (956) 683-4846.