Middletown 4-year-old tackles obstacles despite rare syndro…...

MIDDLETOWN, R.I. (WPRI) — Rowen Duffy is like any other four-year-old. He loves dinosaurs and his older brother and sister.
Unlike other four-year-olds, Rowen was born with his hands and feet facing the wrong direction, a rare syndrome that he'll battle for the rest of his life.
Rowen's therapist, Diane Jones at University Orthopedics in Middletown, sets up an obstacle course for him each week.
The bars she places along the floor are "mountains." The blue mats Rowen has to jump over are "rivers."
She says he always comes ready to conquer any terrain.
"He has such a resilience about him," she said.
Rowen's parents found out while he was in utero that their son had a rare condition called arthrogryposis, causing his muscles to involuntarily contract.
"I think the immediate reaction is that sinking feeling in the pit of your stomach, that you never thought this would be you," said Rowen's mom Stephanie.

She said Rowen's diagnosis is on the less severe side of the spectrum, but it still meant three surgeries in his first three years of life: one to get his hands and feet positioned correctly, another to keep his eyelids from closing, and a third to release his Achilles tendon so that his feet could get closer to the ground.
Rowen's feet and hands inadvertently turn inward, so Diane is constantly reminding him to fight what his muscles want to do, saying, "Flat feet!" or greeting him with a double high five so she can scoop under his hands and get them to stretch a little bit.
"It's really nice to see him. Prior to surgery and prior to the splinting ... it was challenging to move," Diane said. "And now he can fully jump like other kids."
"That's a really exciting thing to see, with all the work we've put forward here," she added.
While a challenge, Rowen's parents also say, in a way, his disability has been a blessing.
"I think the coolest part for us is that he does it with grace and resilience and with his funny personality," Stephanie said.
She said it's taught them, and Rowen's older siblings, empathy and understanding.
"The level of maturity that we've observed with [them] helping Rowen up onto the couch or giving him a hand down the stairs," Stephanie said. "Being accepting of others with physical differences."
With each step and each smile, Rowen's proving he's Small but Strong.

Middletown 4-year-old tackles obstacles despite rare syndrome

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