BOSTON (WHDH) - A Boston Children’s Hospital patient is defying the odds after going through 22 years of treatment for a rare illness that affects his motor skills.

Luca Paolacci was diagnosed with Apert Syndrome at birth. The genetic disorder causes the fusion of certain bones and requires patients to adapt with bodies that aren’t like other kids.

“Every cell in the body is impacted by this,” said Dr. Brian Labow of the Boston Children’s Hospital.

Paolacci has been undergoing surgeries for his entire life and is a nearly lifelong patient at Boston Children’s Hospital, traveling back and forth between Massachusetts and his hometown of Zagarolo, Italy.

“It was always like a lifetime work in progress just because my fine motor skills were in constant need of fine tuning,” Paolacci said.

Despite his physical difficulties, Paolacci has joined a rugby team, got involved in marching band, and has led a very active life. He is also studying to become an automotive engineer.

Paolacci will now work on strengthening and lengthening his thumbs and deepening the web space between his fingers.

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