Walking Tall: Pain Treatment Leads to Complete Transformation
Shannon Lowe could hardly believe her eyes as she watched her daughter’s first courageous steps. As Emily boldly placed one foot in front of the other, Shannon was at-once elated and fearful - as all parents are when witnessing one of their child’s pinnacle milestones.
At 14 years old, it was a milestone Emily had given up hope of reaching.
The ‘Sick Kid’
Emily spent the first 14 years of her life combatting an endless wave of illnesses. At just 9 months old, she was diagnosed with a chronic heart condition and a rare blood disease. Within two weeks of those diagnoses, her tiny appendix burst, causing her to become septic. At 3 1/2 years old, doctors discovered scar tissue had amassed throughout Emily's body – the lingering effects of her ruptured appendix. She underwent multiple surgeries to remove scar tissue, which included extracting a fallopian tube and parts of her intestines.
The long-term effects would wreak havoc on Emily's body for years.
By the time Emily reached the eighth grade, she was confined to a wheelchair and living in constant discomfort. She woke each morning to severe headaches, throbbing back pain, and light sensitivity. Sitting through class became impossible, so she completed lessons from home. And the constant headaches kept her from reading text messages or connecting with friends through social media. In every way, Emily was limited from enjoying a normal life.
"I was wondering why I can't be normal, why I can't do things other kids can do," Emily said. "This was going to be my 'normal.'"
Seeking – and Finding – the Answer
Emily visited numerous specialists to pinpoint the cause of her condition. But she was repeatedly misdiagnosed and given ineffective treatments, including up to 17 medications. Frustrated by the empty search for answers, Shannon began scouring the Internet for help. And she soon learned Cara Hoffart, DO, was leading an innovative treatment program at Children's Mercy for kids with Emily's exact symptoms.
The discovery sparked hope. And Emily was soon meeting face to face with Dr. Hoffart in preparation for the program, called Rehabilitation for Amplified Pain Syndrome (RAPS).
No Looking Back
The RAPS method initially sounded unorthodox to Shannon and Emily – undergoing three to four weeks of intense physical and occupational therapy in place of medication or surgery. But Dr. Hoffart provided reassurance, and Emily was soon ready to get to work. By the end of that initial meeting, Emily was already taking her first bold step – casting aside her wheelchair.
"I told Emily the wheelchair had to go," Dr. Hoffart said. "No matter how long it took her to walk, that is what we had to do."
The bold approach worked.
Emily was entrenched in physical and occupational therapy five to six hours a day. Working with hunched posture, the RAPS team assisted her as she muscled her way through each demanding task. Emily received added support from the team's behavioral health specialists, who help patients conquer the emotional stresses of the condition.
Then, as the first week of the program was coming to a close, the unthinkable happened. Emily was suddenly walking on her own. In that instant, hope for her future was renewed.
“It was unbelievable; My mind was blown!," Shannon said. " I knew the program would help, but I didn't realize it would change our lives."
Life Made New
Since completing the RAPS program, Emily is leading a full, active life. The wheelchair and constant pain exist only in her memory. And she now spends her time relishing common things like going to school, being with friends, and enjoying an activity that headaches once kept her from – settling into a good book.
"The program changed my whole outlook on life," Emily said. "I feel like I have a life now."