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November 24, 2017
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Rare disease builds resiliency for youth
by Lora Whelan

 

     On a sunny mid‑November morning, 9‑year‑old Webster Case put aside his crutches and walked a few steps without them for the second time that day. He turned and smiled, and then, like many a 9-year-old, grew bashful of the attention. Two years ago Webster was diagnosed with Perthes disease, a rare condition that has no cure. Since then, he has been on a journey that will continue for the rest of his life.
     "We're extraordinarily proud of him," say his parents, Bill and Nicole Case of Whiting. Webster had always been an athletic boy, so when he developed a limp two years ago they chalked it up to the youngster over‑extending himself during a soccer game. "He was a very active little guy," says Nicole. But when their son attended a highly anticipated sports event and could not participate in his usual enthusiastic manner, they knew something was wrong. Their doctor was out of town, but they had the help of a nurse practitioner who ran a battery of tests and had him diagnosed in a very short amount of time. "We were so fortunate that she was so thorough," says Nicole, sharing that other parents she has spoken to since had often waited for months before receiving the Perthes disease diagnosis for their child.
     The disease is rare and presents in childhood, with boys more likely to have it than girls. The condition affects the hip, with the temporary disruption of the blood supply to the rounded head of the femur. The lack of blood supply results in the death of bone cells, a process called avascular necrosis. After a time the blood supply resumes and the bone cells begin to regrow, but the new growth does not always grow as it should.
     In Webster's case, the new growth had to be surgically altered. In early October he underwent surgery to have his femur bone cut, reshaped and realigned to fit back into the socket. "It worked well," says Webster when asked how he felt about the process.
     It was a long road before that surgery could take place, with X‑rays taken every three to six months to monitor the disintegration and regrowth of the femur. "It has to run its course," says Bill.      "It's a blind process because the information is only as good as the last X‑ray." There was no running or jumping allowed, quite a sentence for a child used to a high level of physical activity. Instead he became involved with the Machias Valley Swim Club and the Washington County Children's Chorus. His mother says that when the pool in Machias was closed for a few weeks of maintenance, they suddenly realized how important the hour‑long swims had become. She is grateful that there were other outlets for her son to pursue when he was no longer able to join in his former sports activities.
     In September 2016 the X‑ray showed that the bone was done with fracturing. He was allowed to jump again. On their way home from Boston they stopped at New Hampshire's famed Hampton Beach. Webster jumped from a ledge exclaiming with happiness. "It felt a lot different, but it felt good," he says shyly of that moment. However, the bone grew back in such a way that surgery was necessary for Webster to be able to move normally and without pain.
     As a Shriner Mason, Webster's father has long played the part of Jiggs the Clown, who works to bring cheer to ill children in need of comfort. When the diagnosis first came in, Bill knew exactly where his son needed to go, the Shriner's Hospital for Children in Boston. He says, "The surgery team was extraordinary. We had some of the best medical people in the world." He pauses. "I had referred so many children over the years but never thought it would be my own."
     Since the October surgery, Webster has been back at work with his physical therapist at Down East Community Hospital, who has been working with him for two years. However, in just the short amount of time since his surgery his movement has improved exponentially, says his father.      Webster does weight training and load bearing exercises with his therapist. "His muscles need to be retrained," says his father. When his mother mentions a recent swimming session, Webster says with enthusiasm, "When I swam I was able to kick with both legs!" His mother smiles, delighted with the memory. "He took off."
     Webster has learned some important life lessons at a very young age. If his experience can help other children, he wants to share. "Patience," he says. "You just have to work your way through it, whether you want to or not." The big picture can be hard to keep, though, when such things as high curbstones, heavy doors and multiple steps become major hurdles to navigate. Halloween in Machias was a surprise, says his mother. She thought that if she was at the helm of her son's wheelchair, they'd be all set during the downtown trick-or-treat event. "It was impossible," she says ruefully.
     Not one to dwell too long on barriers, she asks her son what his goals are. "By spring I want to play baseball," he says with a shy grin. The other big plan on the agenda is to join the Washington County Children's Chorus trip to France in June. The chorus just wrapped up a pie fundraising campaign, with Webster selling 49 pies for the cause.
     While the trip to France and the difficulty of navigating a foreign environment with crutches and a wheelchair had given the Cases pause, "After the surgery, we're not worried about France," Bill says. Nicole adds, "As a parent I worry, but I realized he's fine. We need to be fine." Her husband says, "Adversity has built character in this guy that's quite something."
     Webster Case has created a short YouTube video about his disease that has received over 500 views since he uploaded it on November 11.

 

 

 

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