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Rhys’s Story

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Rhys came to Children’s Therapy Center as an infant after being diagnosed with microcephaly and schizencephaly, a rare birth defect that causes abnormal clefts in the brain. Now nearly five years old, his journey has been amazing – read all about it here – and we caught up recently with his mom, Erin, for an update!

“Rhys has been doing so well!” she says. “We are so proud of our guy.”

Horseback riding as therapy. Rhys started hippotherapy last January at Little Bit Therapeutic Riding Center in Redmond and now participates at The Pegasus Project in Yakima. “Hippotherapy has been a game-changer for him,” Erin says, “It has helped dramatically with his posture and core strength.”

Planning ahead for a growing child. Erin and Rob started planning years ago for the day when Rhys would become too heavy to lift, and they’re glad they did. “Rhys is now walking using a Crocodile gait trainer and uses it at school and to get to and from the car. He does use his wheelchair when we’re on longer outings like to the mall or dinner.

Making progress with eating. “He’s eating all kinds of things but macaroni and cheese is a favorite,” Erin says. “When he does get too much food in his mouth, though, he’s able to recognize it. He takes the food out and starts over again. He still makes a mess but it’s significantly better!”

School as a positive influence. “It’s helpful for him to be in the same environment as his peers,” Erin says. “His first experience with other kids was at CTC where he learned how to sit in his chair or be still during circle time. He’s now participating in singalongs and puts hand on his heart during the Pledge of Allegiance.”

New goals. “I’d say the goals we’re focused on now are increased independence, learning how to walk on his own, and getting him a communication device he can use while he is also learning new words.

“As parents, we’re a lot stronger now, four years in to raising him. I think the biggest reasons is that we have community around us: school, therapists and his caregiver. I don’t know if we’d be in the same place without all those things. Having reprieve from caregiver 3 days a week has been incredible. I don’t know what I would do if I was responsible for 24/7 care of Rhys, with no one to help me, nowhere to send him. Community has been everything – it’s scary to think about not having that. I understand the desperation many parents feel trying to raise a child with special needs. Parents really need resources for support.”

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