After Losing Three Children to a Rare Disease, a Grieving Mother Eases the Burdens of Parents Like Her

MEXICO CITY, MEXICO — Tiaré Girón moves her hands constantly when she talks. Her gestures carry the nostalgia she feels when she remembers her three children — Jesús Daniel, Gael and Ximena — all of whom died from an extremely rare genetic disorder that doctors could not diagnose. They, she reflects, are the reason she is fighting so that thousands of children with highly specialized diagnoses and their families can receive comprehensive support.

Girón, 32, is the founder and director of Un Bolillo para todos, a nonprofit that helps 8,000 pediatric patients and their families with medicine, emotional support and personal hygiene supplies, things which are not addressed by other organizations or the health care system.

This association embodies Girón’s personal mission, which germinated in 2014. That was the year her second child, Jesús Daniel, nicknamed Bolillo, showed the first signs of the health complications that would keep him hospitalized for nearly a year before he died.

Aline Suárez del Real, GPJ Mexico

Tiaré Girón is the founder and director of Un Bolillo para todos, an organization that helps sick children with highly specialized diagnoses and their families access medications and devices, as well as support to improve their quality of life.

In Mexico, there are at least 1,496 organizations listed in the Federal Registry of Civil Society Organizations that assist with active health care issues. These associations often help by funding treatments and medications the hospitals do not provide. However, Girón says that in many instances, the support is tied to a medical diagnosis, which she did not have in the case of her children.

Girón lost her three children to the same genetic disorder. Jesús Daniel “Bolillo” went first, at the age of 1, in 2015; in 2017, Gael followed when he was 11 months old. Finally, Ximena, her firstborn, died in 2018 at 7 years old.

“Not having a diagnosis was very difficult to process. For a long time, I thought that if we had known what they had, they could have been saved,” she says.

From exchanging medications to creating an association

Without access to economic support to handle Jesús Daniel’s condition, Girón joined other parents in exchanging medications at Instituto Nacional de Pediatría, a public hospital that specializes in treating children, where her son had been admitted.

The national institutes of health in Mexico operate by charging at-cost fees on a scale based on the patient’s socioeconomic level, which ensures that services are free for those who cannot afford to pay. However, the hospital does not always provide everything that goes into the treatment, which means there are some supplies the patient’s relatives must obtain themselves. And they can cost from hundreds to thousands of Mexican pesos.

“There is a basic list of the medications that the service covers. The socioeconomic study determines which fees the patients will pay, but not everything is covered,” says an employee who works in management at Instituto Nacional de Pediatría, who asked that his name not be used because he is not authorized to speak to the press. “Especially with rare illnesses or complicated diagnoses, the medications are not on the basic list.”

Many families struggle to cover the costs, particularly in situations where one of the domestic partners, generally the mother, assumes the role of primary caregiver.

Girón spent “nearly two and a half years” caring for her children in the hospital. She remembers how, during that time, her family’s financial situation was precarious. Her husband, Daniel Olvera, barely made enough to pay for food and household expenses, and that did not include transportation, food for Girón at the hospital or medicine for Jesús Daniel.

“I couldn’t stop working in order to help Tiaré care for the children, but I also wasn’t making enough with what I was earning because there were so many expenses,” Olvera says.

The medication exchanges awakened Girón’s interest in helping other families. She established her association in 2015, and at her daughter Ximena’s request, she named it in Jesús Daniel’s honor. They currently work with children’s hospitals like Instituto Nacional de Pediatría, and cover costs with monetary and in-kind donations.

Caring for the caregivers

Un Bolillo para todos provides comprehensive support to the families of ill children. This includes job training sessions for parents, raffles for household appliances and school-supply giveaways for the patients’ siblings.

“I think about the things we needed as a family when we were here, about what my daughter wanted and we couldn’t give her,” Girón says. She remembers Ximena as a diligent girl who liked going to school, handing out food and personal hygiene kits at the hospitals, and listening to the Mexican rapper Santa Fe Klan.

The personal hygiene kits, which Girón’s daughter used to help her hand out to people waiting for news of their loved ones in the hospital, include supplies such as soap, moist towelettes, deodorant, and fresh socks and T-shirts. She says her idea is to promote self-care among the caregivers.

Aline Suárez del Real, GPJ Mexico

Tiaré Girón’s work has inspired others to come together to get patients the medications they need.

“Sometimes you spend many days there without being able to even bathe yourself. And when you finally can, you feel good. It gives you energy,” Girón says.

The federal government has shared recommendations for caregivers to promote their self-care, some of which include free time, exercise, and good eating and hygiene practices.

“I accept it with so much appreciation because now you’re not spending by buying it yourself, and it saves me the trip to go out and buy it,” says Karla Rosas, whose son is in intensive care.

“It has helped us a lot, not just my daughter, [but] me, her father, the family. There is no way for us to repay her for what she’s done,” says Maricruz Cardo, who has received medication and emotional support from Un Bolillo para todos.

Living on a promise

After Ximena’s death in 2018, Girón’s husband questioned her desire to keep working with the foundation. “He said he didn’t understand why I wanted to continue with the association, why [I would] continue going into the hospital and seeing children suffer and, even worse, die,” she says.

But even after losing her children and spending so much time in the hospital, the answer is clear: “I promised Ximena. Plus, I know what it’s like to go through this. If I can help out with something in those difficult times for the mothers, I’m doing it.”

But it’s not always a simple task, especially because she cannot always help.

Today, Girón works with the health institutions’ social services departments to understand what each patient requires and sees certain procedures through to help them. In addition, Un Bolillo para todos offers assistance with funeral expenses, which in Mexico City cost an average of 19,133 pesos (approximately 1,130 United States dollars).

“We are counting on her to help other families. We can’t always do more [to assist families and patients in need], even though we would like to. But we know that if she can, she’ll do it,” says Leonel Quiroz, a social worker at Instituto Nacional de Pediatría.

Girón’s work has already begun to replicate itself at Instituto Nacional de Pediatría, where other caregivers are building networks to obtain medications and exchange food while waiting for news of their loved ones.

“The doctors tell me I’ve started a movement,” she says, pleased.

The positive reception of her work is a source of pride, but more than anything, it’s gratitude that motivates her. She says it is a way to continue honoring the lives of her children, who are always there helping her.

“Every achievement we have,” she says, “I think it is my children who, with their fairy dust, are making all of this a reality.”