Good Works Gazette

Niños Incapacitados

This is the first in an ongoing series featuring groups doing good work in our local community. I launched this column featuring the program Niños Incapacitados to honor my volunteer service there which has forever changed me for the better.

Entering information into a data collection sheet, I didn’t notice the little girl in front of me for a few seconds. She walked behind the table at the Jocotepec Cultural Center where our monthly clinics are held. Her smile could melt the coldest heart, and she was not even the tiniest bit self-conscious of her completely bald head. She was cancer free and brimming with life. She handed me a rose with a little note that read “Gracias a esta fundación por estar en esta batalla conmigo.” Thank you to this foundation for being in this battle with me. I fought back tears as I gave her a hug and thanked her for the gift.

Sitting at the same table on a different day, a mother sat across from me wiping tears from her eyes. I carefully entered the data from the facturas she had given me. When it came to the column “type of service,” I entered “GF” gastos funerarios, funeral bills. Despite the prayer, devotion, medical care and financial support, sometimes the battles are lost.

Between these soaring triumphs and devastating heartbreaks, there are the everyday struggles and joys of raising a special needs child. The last thing a parent should have to worry about is having the monetary means to cover the additional expenses their child requires. This is where Niños Incapacitados comes in. For 51 years, this local organization has provided financial support to families with special needs children.

Families are referred to Niños Incapacitados from the Mexican social service agency Integrated Family Development or Desarrollo Integral Familiar (DIF). While Mexico does have a form of socialized medicine, many medications, such as anticonvulsives, are not covered. In addition, there are barriers to care, like transportation expenses and limited health literacy. Niños Incapacitados helps coordinate with both governmental and nongovernmental agencies to break down these barriers and ensure the best available care.

The organization is 100 percent volunteer run with a mix of volunteers from the expat and Mexican community, including several mothers whose children either were or are in the program. I have volunteered for Niños Incapacitados for the last eight years. I am just one of a large core group of volunteers who not only see the benefit of the program but who have been changed by our involvement. The children we serve shine with a blinding brilliance. Interacting with them rips away all artifice. They break the casing around our hearts into a million uneven pieces and allow us to feel the pure joy of simply being.

On a practical level, the program covers an extensive range of health-related expenses including medical assistive devices (such as wheelchairs, orthopedic shoes, and braces) psychological help related to the child’s condition, surgery, medical consultations, lab work, chemotherapy, medications and more. In some cases, they cover the cost of diapers and supplemental food. Niños Incapacitados currently serves 135 children from Jocotepec to beyond Mezcala, including families from Ixtlahuacán.

Imagine paying a week’s salary for just one of the six or seven medications your child requires. This is the reality for many of the parents in our program. The current minimum wage in Mexico is 278.80 pesos per day. A two-week supply of large diapers costs 500 pesos if you catch a sale, the anticonvulsive medication Copinar is a whopping 1,244 pesos for 28 tablets and 48 ounces of protein powder costs 1,360 pesos with a steep discount. These parents often work two or even three jobs, fund raise together and go without so their children can simply live. The financial support provided by Niños Incapacitados is literally lifesaving.

If you’re interested in volunteering for Niños Incapacitados, please fill out the volunteer application at their website: www.programaninos.com. You can also donate to the program at the same website. Donations are tax deductible in Mexico, the United States and Canada.

Good Works Gazette features a different local group doing good work in our community each month. If you would like to nominate a group to be featured, please email Daria Hilton at daria_hilton@hotmail.com.