Nicklas was born with popliteal pterygium syndrome, an extremely rare condition.  Although it affects no two people the same way, the syndrome’s hallmark is webbing on the backs of the legs.  For Nicklas, the condition also caused craniofacial anomalies (including a cleft lip and palate), orthopaedic problems and urologic issues.

Shortly after his birth, Nicklas and his parents, Gary and Greta, were referred to Gillette Children’s Specialty Healthcare.  Before his first birthday, he had 11 surgeries, including one to disconnect the cord inside his legs that caused the webbing.  Despite ongoing surgeries to help correct the webbing, Nicklas will continue to require surgery and care from Gillette into adulthood.

Today, Nicklas sometimes uses a wheelchair, depending on his stamina following recent surgeries.  “He’s limited mostly by his own imagination as he works to get his sea legs after yet another operation,” Greta explains.  “But growth is his enemy.  Every time he grows, his abilities regress.” 

Currently, his legs cause him significant pain.  Even so, his parents describe him as “a precocious child with an incredible sense of humor who was blessed with a lot of personality.” 

Recently, Nicklas and Greta were discussing challenges.  Nicklas paused to consider his own.  “Then he told me, ‘I don’t always like my math homework, so that is probably my biggest challenge,’” his mother recalls.

She says the family is fortunate that Gillette offers a broad span of services to meet Nicklas’ needs throughout his life.  “We’re grateful to the entire team at Gillette, which has been with us along the way,” she says.

<< Back to Meet the Kids