Marco’s story

Marco’s story

Build your legacy

Meet Marco

Marco is a husband and father who loves sports, storytelling, and spending time outdoors with his wife and daughters. When a twitch in his arm persisted, he saw a series of doctors before learning that he has amyotrophic lateral sclerosis (ALS). The illness results in gradual paralysis of the muscles, including those responsible for speech. Marco uses a communication device he controls with his eyes to speak with a synthetic voice and work on his writing. He has published three children’s books as a gift to his daughters.

“I want to show other people with ALS that it is worthwhile to continue. Life always offers opportunities.”

— Marco Schulz

Marco communicating with his daughters using his I-Series device

Life with assistive technology

Three years after he was diagnosed with ALS, Marco began to lose his voice. After a frustrating experience with a speech device from a medical supply store, he searched the internet for a better option. When Marco discovered the I-Series, he unlocked a richer way of life. Using the TD Browse app, Marco explores his curiosities and stays informed on the internet via eye tracking. With the Communicator 5 app, he can talk to his family and friends, write stories, and maintain his presence on social media, where he has reached influencer status through his candid posts about the realities of ALS. Living with the illness comes with pain and discomfort. Communicator 5 helps Marco create a soothing environment with music and television as well as lighting and temperature controls. In his favorite moments, he loses himself in a sports game or movie with his family beside him.

Young boy with autism using Tobii Dynavox AAC app and TD I-110 speech generating device with his SLP

Life with assistive technology

Brock's Speech-Language Therapist, Emily, recommended assistive technology to the family. Brock uses the TD I-110, a touch screen speech generating device, to ask for juice, play with his little brother, Beau, and practice words he learns in school. Emily introduced Brock to the device in one of his favourite places: the hallways of his autism centre, where Brock’s first words were “go” and “run.” Now, Brock takes his TD I-110 wherever he goes. Using TD Snap communication software, Brock can explore page after page of colourful symbols that help him build vocabulary on trips to the zoo, the playground, and other fun places. Like many kids communicating with Picture Communication Symbols (PCS), he often switches between his device and print solutions, such as the communication boards posted on the walls at his centre, which are made with the same symbols found in TD Snap. This mix of high and low-tech AAC makes it easier for Brock to communicate and learn.

The power of teams

Marco’s wife Nina and their two daughters give him the emotional strength he needs to persist in his fight with ALS. His palliative nurse Özgür assists him with physical needs and helps to keep him smiling. Marco has also cultivated a vast network of connections on social media, including a few new friends who also have ALS. His efforts to raise awareness about the illness eventually caught the attention of ZDF, a major German news outlet. With the aid of his I-Series, Marco told his story to a large audience, which helped him sell more copies of his books than he ever imagined possible. He hopes the collection will inspire people to learn about ALS, but most importantly, hopes his daughters will cherish the stories forever.