La Niña – The Girl

Lupita Tapia is just like any other 11-year-old girl... almost.

She lives with her family - mother Matilde Muñoz, father Miguel Tapia and brother Angél - in Magdalena, Son., Mexico, an hour south of the United States-Mexico border. A very intelligent little girl, she attends the fourth grade and spends her free time playing in the street with her neighborhood friends. Her smile lights up a room and her warm brown eyes are alternately mischievous and determinedly focused. Those who know Lupita love her and all who meet her cannot resist her charm.

Lupita is just like any other girl... except that she writes with her feet.

When she was barely 6 months old, doctors told her mother that Lupita had cerebral palsy, a chronic disorder that affects the parts of the brain that control muscle movement.

Unable to walk, Lupita is bound to a stroller. She cannot speak more than a few garbled words, and then only rarely. Her face frequently spasms, changing from an angelic smile in one instant to a twisted grimace in the next. She can barely control her thin, delicate arms and her hands are often tightly clenched, one or two fingers extended, as if she is grasping something we cannot see.

At the time she was diagnosed, physicians did not know what Lupita would be capable of. In some cases, children afflicted with cerebral palsy are minimally affected, with just a slight impairment in movement. In others, they have almost no control over their body and may even have serious mental disabilities.

Lupita is somewhere in between, but far from incapable.

Largely on her own, she has figured out how to use the only parts of her body that she can consciously control, her legs and her feet. She has found a way to communicate, either by pointing at things that she wants or by pressing her big toe to the keypad of a special device, called a SpringBoard, that puts into words what she cannot say herself.

Sus Pies – Her Feet

Although extraordinary and uncommon, it is not unknown to have a child with cerebral palsy learn to use his or her feet.

The 1989 film, My Left Foot: The Story of Christy Brown, starring Daniel Day Lewis, is based on the true life of a boy, much like Lupita, who learns to paint and write using his left foot.

“What you do when you have a child with severe cerebral palsy is that you look and you try to find some body movement,” said Sharon Hendrickson-Pfeil, a speech therapist from Mariposa Therapies in Tucson, Ariz. “If they can’t point with their hand, can they point with their foot?”

Hendrickson-Pfeil began working with Lupita four years ago at the St. Andrew’s Children’s Clinic in Nogales, Ariz., and said that Lupita’s ability to use her feet was a surprise:



Hendrickson-Pfeil was ecstatic about the find and quickly began to focus on developing that movement in a way that would help Lupita learn to communicate.

However, teaching children afflicted with cerebral palsy is a difficult task. The erratic movement of their muscles prevents them from doing things that a fully-functional child can. Therapists, teachers and family members alike must find more creative ways to teach the most basic of skills.

One method that Hendrickson-Pfeil uses at the St. Andrew’s Clinic is having the children place colorful foam adhesive letters and numbers to a paper that asks such things as Cómo te llamas (What is your name) or Cuántos años tienes (How old are you).

At the clinic on April 3, Lupita demonstrated this with surprising ease. Squeezing little green letters between her first and second toes, she extended her left leg toward the page and placed the letter on the line, pushing her big toe down like one would the pointer finger.

She has even begun to use her right foot as a "helper foot," holding the foam letter while she pulls the adhesive backing off with her left toes.

That was the first time Hendrickson-Pfeil had seen her do that.

"She has begun to coordinate use of her feet," said Hendrickson-Pfeil. "So she is using her non-dominate foot as a helper foot. Now if you imagine kids drawing, you know that a kid will be right handed or left handed and use the other hand to hold the paper. She's doing that with her feet. This is awesome."

But for a brilliant girl like Lupita, who does not have the cognitive impairment that so many other children with cerebral palsy have, this is not enough.

“[It] challenges all of us to find ways for her to communicate,” Hendrickson-Pfeil said. “Because she is so bright, she needs more and more ways to communicate at a level that is commensurate to her intelligence.”

This is where the SpringBoard comes in.

La Esperanza - The Hope

The SpringBoard was designed by Prentke Romich, a company devoted to developing learning devices for individuals with various disabilities.

About the size of a notebook and encased in red plastic with a large touchable screen, the SpringBoard looks like a toy computer. The screen is filled with small boxes depicting cartoon images of people, animals, various food items, and other things. Under each image is an associated word, such as "I", "play" or "food". When touched, the words are shown at the top of the screen and spoken out loud by an automated child's voice.

If a child has enough mobility to touch the boxes on the screen, he or she can use the SpringBoard to create basic phrases or sentences.

Luckily for Lupita, she does.

Using a Spanish version of the SpringBoard, whose prototype was actually developed at the St. Andrew's Children's Clinic, Lupita can tell her mother, "Me gusta eso" (I like this one) or "Quiero jugo de naranja" (I want orange juice).

For children who were not able to communicate for most of their lives, discovering that it is possible can be an emotional experience. After each successfully constructed phrase, their eyes light up and they jump up and down or - in Lupita's case - rock back and forth in their chair with excitement.

Lupita has been working with an old version of the SpringBoard for several years, but it was time for her to step up.



Purchased using funds provided by the St. Andrew's Clinic, the SpringBoard that Lupita has been using costs around $2,500, an expense that Lupita's family would never have been able to afford, according to Hendrickson-Pfeil.

They couldn't even afford a shuttle ticket from Magdalena to Mariposa Therapies in Tucson for their April 18 appointment with Hendrickson-Pfeil to practice using and to pick up the device before the next St. Andrew's Clinic.

Currently, Hendrickson-Pfeil is working to get Lupita on a more sophisticated device that she will be able to use for many years to come. The company developing the device is planning to donate it to the St. Andrew's Clinic for specifically for Lupita.

However, when Lupita turns 18, the cut-off age for children to receive services from the St. Andrew's Clinic, she will no longer be eligible to upgrade to a more sophisticated device, and if the device happens to break, more than likely, there will be no way for her family to obtain a new one on their own.



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