Olivia Stamps of Batesburg was just 2 years old when she was diagnosed with a neuromuscular condition that caused her to walk on her tip-toes, making it difficult for her to run and play and creating the potential for further complications down the road.
But thanks to cutting-edge treatment from the Shriners Hospitals for Children in Greenville, Olivia, now 10, walks with a perfect gait and even wants to start dance lessons. Soon she’ll be traveling around the country sharing her story.
Olivia is one of two children recently selected as patient ambassadors for Shriners Hospitals for Children, a network of 22 nonprofit hospitals that provide care for children with a range of medical conditions, from spinal cord injuries to severe burns. As a patient ambassador, she’ll attend Shriners fundraisers and celebrity golf tournaments and visit patients like herself to provide encouragement and support.
Olivia’s story began when she was learning to walk and her parents discovered that she could not walk with her feet flat on the floor. She couldn’t bend down to pick things up or stand still either, and their family doctor, suspecting cerebral palsy, suggested they take her to see a neurologist.
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The family, (then living in Indiana), took her to the Shriners Hospital in Chicago where doctors confirmed the diagnosis of cerebral palsy, an umbrella term for neuromuscular conditions affecting movement, muscle tone and coordination.
Kerry Stamps, Olivia’s mom, recalled being scared at the diagnosis, not knowing much about cerebral palsy or what treatment would entail.
“We were just a little nervous for her future and what she was going to have to go through,” she said.
In Olivia’s case, the condition caused stiffness and tightness in both legs and would have eventually caused problems in her hips and lower back. Her way of walking on her toes also attracted unwanted attention and comments from strangers.
“I think she thought she was this outcast that people just stared at,” Kerry Stamps said.
Doctors tried several treatment options, including casting, stretching and Botox. After the family moved to South Carolina to be near relatives, Olivia received a gait analysis in the movement analysis laboratory at the Greenville Shriners Hospital, a facility that uses motion-capture technology to measure how patients walk.
Doctors studied the data and recommended that Olivia undergo surgery to lengthen her heel cords and hamstrings, presenting Olivia’s parents with a difficult decision. They eventually chose to go through with the procedure once she was old enough.
“If the surgery failed, I wanted to at least be able to say we tried,” Kerry Stamps said. “I wanted to be able to look her in the face and say we tried everything.”
At age 6, Olivia underwent the surgery and a lengthy rehabilitation that required her to wear braces for six weeks and basically relearn how to walk. The procedure was a success, and Kerry Stamps said her daughter was determined and maintained a positive attitude throughout the process.
Already the scars from the surgery are disappearing, and as the family moves back to Indiana, Olivia is looking forward to her new role as patient ambassador and to keeping up with her peers.
“There’s a lot of things that she wants to do,” said Kerry Stamps. “You can’t slow her down. She drives me crazy.”