Bright florescent lights. Clean bleached sheets. Quiet closed room. For junior Tessa Smith, the hospital is a familiar building. It was there that she was diagnosed with Multiple Echondromatosis (more commonly known as Ollier’s Disease), a condition that has literally crippled her life. This past summer, however, Tessa took the final step in her long struggle of fighting Ollier’s with a final life-altering surgery.
Tessa was born with this genetic disorder that, according to Orpha.net, causes hundreds of tiny tumors to form in her bone cartilage. If left untreated, the affected leg would eventually grow to be 7 inches shorter, which could lead to foot deformity and hip and back problems for the rest of her life. Tessa explained how noticeable her problem became.
“Over time, the difference between my legs became so pronounced I was walking on tiptoe on my right foot–eventually I had to have a lift put on one shoe,” Smith said.
To treat this ailment, a series of 10 surgeries are required. According to Tessa, her first surgery was exciting and she enjoyed the attention and gifts from others. Her second, however, was the worst operation by far.
“I knew it was going to hurt, but I never could have anticipated how much,” Smith said. “I had the cage on both halves of my leg. I was severely depressed because of medication withdrawal. I no longer enjoyed the constant attention- I just wanted to disappear.”
Adding to these hardships, going back and forth from Kansas City to Baltimore, Md. where all of the operations were performed took a toll on her childhood. While her classmates were busy finding friends and discovering sports, she was 1,000 miles away trying desperately to bend her knee past 75 degrees.
“Since then it’s been an endless game of developmental catch-up which has caused a lot of stress and a lot of self doubt,” Smith said. “It will take me a lifetime to rebuild the confidence Ollier’s has robbed me of.”
The grueling physical therapy took eight months after the first surgery. Five years later, the recovery time took even longer due to the placement of a frame on her upper and lower legs. The last stitch of her tenth and final surgery finally fell out last week, much to Tessa’s joy.
A large part of Tessa’s life has been commanded by the multiple trips to Baltimore, Md. where all of her surgeries were performed. Shockingly, Baltimore is one of her favorite places in the world, despite the unfond memories of Mount Sinai Hospital Orthopedic Ward. While in Baltimore, Tessa visited the Build-A-Bear store, a tradition for her and Shawnee Mission East High School junior Madi Lange. Lange is just one of the numerous friends who have supported Tessa throughout her ordeal.
“I don’t know how I can ever repay the hundreds of people who have propelled me through ten years of hard work,” Smith said.
One of these people is junior Shelby Hawkins who found out about Tessa’s condition freshman year of gym class when she noticed the holes and indents in her leg.
“Angelica [Vincent]and I told her to pretend they were from a vicious battle with a shark [which she ultimately won],” Hawkins said. “Since then, we’ve called her ‘shark bait.’”
Since the holes in Tessa’s leg have healed, Hawkins says their resemblance is closer to bear scratches than shark bites. She thinks Tessa has handled the surgeries very well and that her friend has grown from the experience.
This experience has not gone unnoticed. In May of 2009, Tessa’s medical journey was documented in a nationally distributed magazine American Girl. They published an article called “Tessa’s Story” which included a piece written by her detailing her situation and captioned pictures capturing special moments during her recovery.
Her family helped update others on her condition by writing a blog named “Tessa Jean’s Operation: Detailing Tessa Jean’s experience as she undergoes a surgery to lengthen her right leg.”
In one of the blog posts, her father writes, “We were here in 2004 with a tough little girl who faced her challenges with a fiery resolve and positive attitude… We’re back again now with a woman who’s nearly fully formed!”
Indeed, she is and has learned to embrace her painful past.
“This process has shown me exactly how strong I can be,” Smith said, “This brace brings with it lots of deep self-reflection so I feel… I know myself better than the average teenager…”
The struggle has made her unique and kept her grounded to reality.
“It’s also an accomplishment I cherish,” Smith said, “I could not be more proud of every one of my 34 scars.”