Spinal Muscular Atrophy Awareness Month: Alejandro’s Story

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AlejandroAlejandro, two and a half years old, has Spinal Muscular Atrophy (SMA) and is ventilator dependent. Diagnosed with Type 1 SMA at a very young age, Alejandro lacks the ability to send signals from his brain to his muscles, which results in severe mobility impairment.

Despite his limitations, Alejandro continues to make progress. He successfully communicates using his eyes and eyebrows and recently learned how to move around on his own using a custom wheelchair by pressing down with his toes.

Learning How to Communicate

Alejandro is able to communicate using his eyes and eyebrows. He says “YES” by raising his eyebrows and says “NO” by scrunching them down.

“To us, the most important thing is that Alejandro learns how to communicate,” says Shea, his father.

Alejandro is engaged, socially interactive, and motivated to learn new things. His parents taught him the alphabet and numbers (1-10). Recently, he has started to recognize words and learn to read. Alejandro also is bilingual and understands both Spanish and English.

In addition, Alejandro makes sounds to communicate. He says, “uh-huh” and even has some control over his pitch. When the cuff on Alejandro’s tracheostomy tube is deflated, air is allowed to pass up past his vocal cords to create the “flutter” needed to make sounds.

Using a Gaze-Tracking SystemAlejandro_bubbles

This summer, Alejandro began using a Tobii I-12 to enhance his communication abilities. The Tobii is a computerized eye-tracking device that follows eyesight to facilitate communication.

Alejandro uses the device to string words together to form sentences. Right now, he is able to form two to three word sentences. His recent favorite is “Blow bubbles.”

Driving a Custom Wheelchair

To help improve Alejandro’s mobility, his father – a skilled engineer – recently built a custom wheelchair for his son. Alejandro has been practicing driving the chair for the last six weeks. Watch a video of Alejandro’s progress.

“He’s pretty good at it,” Shea says proudly.

The wheelchair moves by pressing on highly responsive sensors embedded in sandals that work like pedals. With only a few grams of force, Alejandro presses his left toes and the chair moves left. He presses his right toes and the chair moves right. If he presses both toes together, the chair goes straight.

Shea continues, “We want to give Alejandro every opportunity, developmentally, especially during the early years.”

Did you know August is Spinal Muscular Atrophy Awareness Month? What are you doing to help spread the word?

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