In the spring of 2016, 2 year old Finley Smallwood was watching The Ellen DeGeneres Show with her mom, Christina, when another child appeared on the screen and started dancing. A look of awe took over Finley’s tiny, angelic face.
She turned to her mom and said, “I wanna stand up and dance!” It seemed an impossible goal for Finley, who had been born with spastic diplegic cerebral palsy, a neurological condition that caused the muscles in her lower extremities to involuntarily spasm, inhibiting control of her legs. “I felt so helpless,” says Christina. “I would have given up my own legs for her in that moment if I could.”
She gently propped Finley up on the couch, turned on a video camera and made the first of what would be many “dance” videos of her daughter. In it, Finley’s smile is wide with joy as she wills her stiff legs to move to the music. Watching Finley’s delight was both heartbreaking and inspiring to Christina, who, at that moment, vowed to do everything in her power to make her daughter’s wish a reality.
A year after their 2011 wedding, Christina and her husband, Josh, planned on starting a family. “I wanted a baby so badly,” she says. Until this point, Christina, a hairstylist and the daughter of former Major League pitcher and Christian radio host Frank Pastore, had led a fairly charmed life. But a few months later, her father was killed in a motorcycle accident. Not long after that, Christina learned she was infertile. “I felt like a part of me had died,” she says. “I gained weight and cut off my friends. Looking back, I was clearly depressed.” When Josh tried to comfort her, she got angrier: “How could he understand how I felt?”
In vitro fertilization was not an option — it was expensive, and Christina didn’t think she could handle the stress of it. She and Josh decided to adopt, and they carefully pieced together a “Dear Birth Mother” scrapbook of their lives and hoped an expectant mom would pick them. Their prayers were answered when they were matched with a teenager who was almost six months pregnant with a girl.
Christina and Josh were ecstatic and went into overdrive decorating the nursery, buying baby clothes and installing an infant seat in their car. But about a month later, they received an ominous call in the middle of the night. The baby had been born nine weeks early. Christina was excited, but Josh was scared. “I did the math in my head and knew it wasn’t good,” he says. But he buried his terror and put on a brave face for Christina. “She had not one ounce of fear,” he says. “There was nothing but love in her eyes.”
At the hospital, Christina melted when she saw her new daughter, Finley, only 3.9 pounds, in an incubator, hooked up to wires and flashing monitors. “She was so tiny that she would have fit into doll’s clothes,” says Christina. “As soon as I saw her, I said, ‘This is our baby, no matter what.’ I just wanted to take her home.” A few days later, doctors told her there was unidentifiable debris in Finley’s brain and that this could lead to life-threatening bleeding. Even so, Christina remained optimistic. “I kept thinking, She’s going to be okay,” she says. “Denial is very strong.”
The next few weeks were agonizing. Although Christina and Josh had the right to make medical decisions on behalf of Finley, the official adoption took longer. “The birth mother could have changed her mind at any time,” says Christina. “I was terrified. I was up all night, afraid our attorney would call.”
Thankfully, the adoption went through smoothly. But Christina and Josh’s joy was short-lived; doctors discovered hemorrhages on both sides of Finley’s brain and told them she might never walk or talk. “I started losing it,” Christina says. She’d never known anyone with special needs, and now her daughter might need lifelong around-the-clock support. “At the time, I had no idea what a blessing it would eventually be,” she says.
Five weeks after her birth, Finley arrived at her new home. Christina knew she should be overjoyed, but the stress had taken its toll. “I had post-adoption, post-preemie, special-needs blues,” she says. She had stopped working, and she cried for hours. “I remember envisioning chasing a toddler down the hall, teaching my kid how to ride a bike, and just watching those images evaporate,” she says.
Despite help from her mom and an infant occupational therapist, she was overwhelmed. Finley was a happy, smiley baby, but “every time she ate, she spat up,” says Christina. “She hated the bath because it overstimulated her brain. She never slept more than three hours and had terrifying full-body infantile spasms.”
Through it all, doctors were unable to tell Christina and Josh what was wrong; Christina clung to the hope that Finley was just a late developer. But at 15 months, she was diagnosed with spastic diplegic cerebral palsy. “It was a hard pill to swallow, but I also remember feeling this weight was lifted,” Christina says. “Now I had a name for her condition.”
Christina joined online adoption and cerebral palsy support groups, which led to “texting at all hours of the night with other moms, crying, drinking wine together.” Social media became her lifeline, a place to vent, learn and form true friendships. “I felt very isolated in the beginning,” says Christina. “I cried a lot. It was dark. But I found those other moms who were like, ‘It’s fine to feel like that. I felt like that too.'”
Early on, one online friend shared advice that changed Christina’s life. “She said, ‘If your baby’s smiling, you should be smiling. Never pity her,'” Christina says. “I realized that when Finley was happy just sitting there, I was mourning and worrying — not being present. I wanted to enjoy those moments with her.”
Through social media, Christina learned about a surgery called Selective Dorsal Rhizotomy (SDR). The complex procedure involves cutting certain nerve fibers in the spine that transmit signals that cause spasticity. But when Christina asked her doctor about it, he brushed the suggestion off. Plus, there was the expense — close to $40,000, and the family’s HMO wouldn’t cover a dime of it.
But other moms who’d had positive experiences were very persuasive. And the name of one doctor kept coming up — T.S. Park, M.D., a pediatric neurosurgeon at St. Louis Children’s Hospital. Around the time Finley saw the Ellen show, Christina submitted an application for the surgery and, to her amazement, was told that due to the specifics of her condition, Finley was an ideal candidate.
Dr. Park’s prognosis was cautiously optimistic: Finley might be able to walk on grass and up a step, but walking on sand and dancing might never happen. It took only half a second for Christina to say yes anyway. The whole family celebrated that night — by having a dance party, naturally.
But where would they find the money? A friend from Christina’s Bible study group, Brittany Rodriguez, had an idea: The Ice Bucket Challenge had recently gone viral to raise money for amyotrophic lateral sclerosis (ALS). What if they started a Dare to Dance Challenge to fund-raise for Finley’s surgery?
They created a YouCaring crowd fund campaign to encourage donations and shot a video about Finley. Brittany’s husband, an engineer for the Los Angeles Fire Department, recruited fellow firefighters to make a dance video. Not to be outdone, the Covina Police Department made one too, and soon a local TV station did a story. The challenge took off, with gossip columnist Perez Hilton, stars from The Bachelor and even one of Beyoncé’s backup dancers posting videos. In the end, the Dare to Dance Challenge inspired close to 2,000 videos from all over the world and raised $70,000. “It didn’t seem real,” Christina says. “I was overwhelmed by the outpouring of love.”
Finley’s surgery took place in October 2016 in St. Louis. Christina walked by her daughter as she was wheeled into the OR. “It was so scary,” she says. “The lights; the big, cold, empty room.” She gently took the pacifier out of Finley’s mouth so that a mask could be put on her face. As the anesthesia kicked in, Finley began jerking and twitching. Although Christina had told herself she’d be brave, she sobbed uncontrollably.
The five hours of waiting were hell, and then Dr. Park came out of the OR with the best possible news: Finley was now free of spasticity. Christina sobbed again, this time from happiness.
But the next day, Finley had a grand mal seizure. Mercifully, there was no permanent damage, but Finley had to lie flat on her back with no pillow for three days. In pain from the incision, Finley kept pleading with her mother, “I want to go home!” For Christina, it was intolerable. “I began to question myself: Should I have done this? Was it worth watching her suffer?” But on the fourth day, Finley was able to sit up on her own. A day later, she was crawling. The following day — Christina’s birthday — Finley was discharged.
The change in Finley was startling. For the first time, she could move her toes and bend her knees. Standing in the walker, she would tell her parents, “With my new legs, I want to dance!” In May 2017, Finley also underwent a stem cell treatment with John Shieh, M.D., in South Pasadena, CA. “It’s basically a stem cell infusion that’s designed to help her build new neurons,” says Christina.
Now, on a visit to the On Pointe Dance Studio in Norco, California, Finley is in full motion on her “new legs.” Wearing a fluffy black tutu, she is rehearsing enthusiastically for her first dance recital, shooing her parents away when they try to help her. No longer does she “wanna dance” — she knows she can, although she still needs an adult’s support to balance. “Having gone through that surgery, she knows she can overcome anything,” says Josh.
Nearby, her mom beams proudly. A few weeks ago, she received news from Dr. Park that Finley should be able to walk completely unassisted within a year. Christina still turns to social media, but now she is the one giving support: “I tell people, ‘We were so focused on trying to give Finley the best life possible that we didn’t realize that was what she was doing for us all along.'”
Want to help Finley? Finley’s first surgery cost $40,000, and she’ll likely need more. Take the Dare to Dance Challenge by posting a video of yourself on Facebook grooving to “Better When I’m Dancin,'” or donate $20 at youcaring.com/fifisnewlegs.