Cassiel has faced challenges since the day he was born. He came into the world dangerously premature at just 22 weeks —weighing just a tiny 1 pound, 2 ounces. As a result, one of his intestines ruptured and he became septic within his first few months of life.
“The miracle happened. He made it,” says Cassiel’s mom, Cynthia. “He has defied the odds countless times.”
He spent more than 168 days in the Johns Hopkins All Children’s Hospital neonatal intensive care unit (NICU), but is now a smiley 7-year-old, despite his more than 15 medical diagnoses, including spastic quadriplegic cerebral palsy. Cass is unable to talk or walk and uses a wheelchair, but this doesn’t stop him from enjoying life.
“The thing that I’m just so in awe of with Cassiel is his attitude,” Cynthia says. “Every day, this little boy wakes up with a smile on his face. He’s quite an example for all of us of how we should all live our lives. His spirit is joyful, happy — he’s angelic. I always say he’s like an angel on this Earth.”
Cass receives care at Johns Hopkins All Children’s and works hard each week doing occupational, physical and speech therapy. He especially enjoys speech therapy because he gets rewarded for achieving goals, like getting to listen to music — one of his favorite things.
“He has remarkable hearing,” Cynthia says. “That’s why he loves music. He gravitates to it.”
Which means there will definitely be an accompanying “dance party.” Since last April, Cass has used a specialized communication device that allows him to communicate with his eyes.
“The first thing we had to teach Cass is that his eyes are what work. You’re teaching them language through sight — it’s kind of like a video game, but you’re playing with your eyes,” says Anne Marie Lieser, M.A. CCC-SLP, a speech language pathologist at Johns Hopkins All Children’s.
From there, Lieser builds language into the therapy session. He starts to understand that when he looks at something, there is a reaction. For example, when he looks at a word like “Music” for a certain amount of time, then he gets to listen to a song. He particularly loves ’80s and salsa music.
“He’s resilient,” Lieser says. “He’s got a good attitude even though his life has not been easy. Even when we put demands on him, he gets frustrated at times, but he always works through.”
The goal is to continue developing language skills using the device so he can express himself more, such as going to the doctor and telling them what hurts or letting his mom know that he’s bored. Lieser will continue to develop his skills at a more advanced level so that he can communicate with his community, medical professionals and peers.
“I hope this will give Cass and other nonverbal children a chance to communicate with others to express their feelings and thoughts,” Cynthia says. “Everyone should be given a voice, and I’m so happy Cass found his."
Visit HopkinsAllChildrens.org/AAC for more information about the Augmentative and Alternative Communication program at Johns Hopkins All Children’s Hospital.