There's not much that can get my daughter Amy out of bed at 5 a.m., but running through Disneyland, her favorite place on earth, is one of them. Shivering in the dark from both cold and nerves, Amy waved wildly to her physical therapist Dustin as he arrived at the Star Wars 5K start line.
Dustin: You ready?
Amy: Ready.
Dustin: We can do this.
Amy: I know.
From behind a barrier I watched as the two joined the eager and enormous crowd. With a blast of confetti they were off, Dustin limping slightly on a sprained ankle and Amy smiling from ear to ear. As they rounded the corner out of sight, I couldn't help but reflect on the crazy journey we took to arrive at this moment.
My daughter has an extremely rare genetic disease called Trichothiodystrophy. It only occurs in about 1 in 1,000,000 babies, and those with the disease rarely survive childhood. Amy is the only known case with her particular genetic make-up, so it's safe to say that her life has always been an uphill battle.
The disease affects Amy's brain, bones and eyes; sometimes just walking can be extremely painful for her. So when the doctor suggested I take Amy to physical therapy to help with her movement, I contacted Rausch Physical Therapy in Laguna Niguel, Calif. and we were scheduled to see Dustin Hancock, DPT.
From the first visit I could tell this was the right place for Amy, not only because Dustin specializes in patients with neurological issues, but also because he relates to Amy like no medical professional has done before. Dustin's brother has cerebral palsy, so he's well aware of what life's like for someone like Amy. He knew she didn't need another person telling her what was wrong with her body. Instead, he asked her to think of a healthy goal to work toward and said that, together, they would come up with a plan to accomplish it.
We were shocked. Imagine being told you're unhealthy your whole life, and then one day someone tells you that you are healthy and you can do things! Thrilled, Amy said her goal was to walk around Disneyland without pain, so she, Dustin and Rausch PT Team got to work.
Amy flourished under this approach to treatment, and I marveled at her transformation. It wasn't just the physical changes that amazed me; after a few visits I noticed Amy's personality starting to come out--something that rarely happens in medical settings. She chatted freely with the aides, playfully joked around with Dustin, and became increasingly more independent. She was getting stronger inside and out.
Then on July 28, 2014, Amy snapped.
We arrived for her weekly physical therapy appointment, and Amy ran on back to get started. Dustin always keeps a close eye on Amy, so he was watching as her leg buckled, thigh bulging as the femur spontaneously snapped in a spiral fracture. Amy fell to the ground, and Dustin immediately ran to her, holding her leg in traction until the ambulance arrived.
There was no way of anticipating such a devastating event, and it was a huge setback. Amy started PT with the goal to walk with less pain; her new goal was to walk again, period. Most importantly, she had to learn to trust her new titanium femur. Each goal met was hard-won, as Amy's disease prevented her bone from healing. Still, she never lost faith in her PT.
Exactly a year after the accident, I watched as Amy confidently zipped into the AlterG® Anti-Gravity Treadmill®--an amazing piece of rehab technology that decreases bodyweight impact so you can safely and effectively strengthen your lower body through injury. With Dustin by her side, she ran. Amy's trademark smile was back, and once again she saw herself as healthy and strong, not sick or broken.
I guess holding someone's broken bone in place brings you closer together, because Dustin and Amy's bond only grew stronger after that day. During therapy they love teasing each other and often take air guitar breaks. They even dress in matching costumes on Halloween (As Amy says, "You know you have a good physical therapist when he wears green tights so you can be Wendy!") With all their progress, it was time for a new goal. That's when Amy and Dustin came up with their craziest goal yet: to run a 5K race through Disneyland--together. It was the fairy tale ending Amy needed to close out this chapter of her life.
Amy started physical therapy with the goal of being able to walk around Disneyland without pain. Two years, lots of tears, and one titanium femur later, I waved as Amy ran across the finish line just as the sun was rising on Disneyland Drive. She had an enormous smile on her face and her amazing physical therapist hobbling by her side.
Yet another goal checked off their list.
By Janice Hansen as told to Casey Gomez
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