Santiago’s Story

Polaroid picture of Santiago.

Driving towards Mobility and Independence

At ChildServe, we believe in giving every child whatever opportunities we can provide to find his or her own spirit and awaken it.

Santiago came to ChildServe in 2009 as an infant. He will turn 3 in May, and is getting a chance to be independently mobile for the first time. Living with a diagnosis that causes muscle weakness, Santiago has never been able to crawl or walk on his own.

At the beginning of 2011, Physical Therapist Beth Hennes introduced Santiago to a power wheelchair to try and encourage mobility. Beth modified the chair by adding support where Santiago needed it since the chair was not made to fit him specifically. Santiago “drove” the chair by pressing his head on the rear headrest to make it move forward, and lifting his head to make it stop. They were able to make a few strides, but overall Santiago didn’t seem too interested in the chair so they took a break from it.

Beth decided to get Santiago back in the chair in February of this year. “When we started this time, I provided him with the forward, left, and right options on the headrest,” says Beth. “Within two weeks, he was independently accessing all head pads and starting to make small turns to avoid hitting objects.”

Since being reintroduced to the chair this winter, Santiago has made great progress using the power chair. The Adaptive Equipment team has created a new seating system that fit on the base of the chair specifically for Santiago so he now has appropriate head, trunk, and lower extremity support to allow him an optimum position for driving.

“Driving the power chair is one of the first real means of freedom and control he has had in his life,” says Beth. He can make choices about where he wants to go without getting assistance, can make the choice to spin in a circle, and he can drive away if he wants to.”