Christine Egan Physical Therapy

As Kellen Smith commands the strike zone from the pitcher’s mound, or sprints up and down the basketball court, he provides little evidence of the physical and emotional journey he and his family has been through.

“I know the sky’s the limit for him,” Kellen’s mother, Amy Smith said. “Every time I think Kellen can’t do something, he does it. And what I’ve learned in my life is I have to trust that.”

The trust Amy now has in Kellen took years to develop, though. When Kellen started walking at 14 months old, Amy could tell something was not right. Some doctors called it Ataxia, some called it Cerebral Palsy. This condition adversely affects Kellen’s fine and gross motor skills, and linguistic ability. Amy said getting the diagnosis felt like an out-of-body experience. The situation was overwhelming and difficult to comprehend.

“We’re a success story but a lot of it is luck,” Amy said. “The important thing is you have to try. You have to give your kid a chance and you have to get past the fear.”

Before reaching a diagnosis, Kellen suffered two grand mal seizures, after which Kellen underwent an EEG, brain MRI and countless other neurological and genetic tests. He was referred to numerous specialists. “It gives you the sense that something is really bad if you have all these people from all over the world looking at your son,” Amy said. “You worry a lot. That was very tough.” Amy waited months at a time to learn if her son had a degenerative condition. A positive diagnosis for one of these tests would have put Kellen on track to be in a wheelchair by 10 and dead by 20.

“I was very anxious,” Amy said. “I was very closed off because I felt like if I let anyone in, I would just fall apart.”

Thankfully, after almost two years of analysis and testing, doctors said Kellen’s condition appeared non-progressive — a huge relief. But all along the way, the Smith Family was getting Kellen the help he needed. They found their resolve through committing themselves to Kellen’s development. The family diligently assembled a team of therapists and immersed themselves in helping Kellen reach his potential. Each week, until he was around five years old, he did two sessions of Physical Therapy, two sessions of speech therapy, and two sessions of occupational therapy. Amy also set up Aquatic Therapy (in the pool) and Hippotherapy (horseback riding) sessions.

“At first, when you get this [diagnosis], you’re so scared you’re trying to control it and you want answers,” Amy said. “And you find a lot of parents that are so driven by the diagnosis. But in so many ways [a diagnosis] doesn’t do anything. At the end of the day Kellen needed help, and he needed therapy. It wasn’t something that was going to go away overnight. And he was going to have it for the rest of his life. And I had to come to terms with that.”

Amy also advocated for Kellen to make sure her son received the resources he needed to thrive to insurance companies, schools, and the local and state government. Kellen qualified for an Individual Education Plan to assist his learning process, but only after more testing and Amy’s persistence.

Kellen is now 13 years old and, “if you met him today, you would have no idea how Kellen started out. He worked so hard and so did we,” Amy said.

Thanks to the rigorous early intervention therapy and Kellen’s unfailing positivity, he has rebounded to the point where Amy trusts Kellen to participate in sports, engage with his schoolwork and socialize with friends — all on his own. “We’re a success story but a lot of it is luck,” Amy said. “The important thing is you have to try. You have to give your kid a chance and you have to get past the fear.”