I first learned of Tonio several months ago from my close friend, Polo Ribota, who since childhood has been deeply involved in our community-based rehabilitation efforts. In my old age, Polo and his family have built a house for me next to theirs in the village of Tablón Viejo, just down the road from Tablón #2. Polo, who is a friend of Tonio’s grandfather, told me that Tonio, “has trouble walking,” and took me there to see what advice I might have.
Tonio’s diagnosis of Duchene’s Muscular Dystrophy had been made a couple of years before by a pediatrician in Mazatlán. Although there was no known family history, the boy´s progressive weakness, his characteristic gait, his hypertrophied (oversized) yet weak calf muscles, and the way he pushed down on his weak thighs with his hands to stand up or climb stairs, led me to believe the diagnosis was correct.
Although the medical diagnosis had been made by doctors, and a muscle biopsy had been performed to confirm it, no one had explained to the family what muscular dystrophy is or what to expect—except that the weakness would gradually increase, and that there is no known medical treatment.
I did my best to explain the disability to the grandparents. I emphasized that although the condition is progressive and life expectancy is short, there was a lot that could be done to help the boy live as happy and fulfilling a life as possible, despite his increasing physical limitations. I pointed out that Tonio has a good mind, and should be given every opportunity to develop and use it. Effort should be made to have him stay in school, and to make schooling a positive and enabling experience.
I also did my best to talk to Tonio, to and try to win his trust. But I soon realized this would not be easy. The boy just looked at me with big wondering eyes, never saying a word. “That’s how he is with everyone,” said his grandmother, “except with us … and only when we’re inside the house alone. Then he’ll chatter away—but he almost never mentions his worries or himself.”
His grandparents were concerned that, on the hillside where they lived, the series of crude steps to get up to and into the house made coming and going an ordeal for the boy. And the problem was getting worse.
I encouraged Tonio’s grandfather to consider building ramps, with railings, and gave him some pointers. The next time I came to visit (several weeks later, as I had been traveling), I was delighted to see the ramps in place and Tonio successfully using them. As the boy showed me how he used them, as ever, he made no comment. But the hint of a smile as he went up and down the main ramp, holding onto the wooden railings, revealed a glimmer of pride in his improved self-reliance.
The main ramp, while steeper than typically recommended, serves three purposes quite well:
It provides easier, safer accessibility for the boy, allowing independent entry to his home.
It supplies good exercise for his weakened thigh muscles: neither too much no too little for his current dystrophic state. (Too strenuous exercise can increase muscle loss.)
It stretches his tight heel-cords by bending his feet upwards as he climbs the ramp. This important stretching exercise helps prevent the Achilles tendon contractures common in muscular dystrophy. (With such contractures the child has to walk on tiptoes, which causes greater instability and earlier loss of ability to walk at all.)