Nine-year-old Taylor Futch has the kind of easy smile that radiates joy. Those who know her call it contagious.
“It’s the most beautiful smile I’ve ever seen,” her dad Jesse Futch said.
Taylor’s smile often articulates what her voice cannot.
“Even though she has trouble communicating, she can have a conversation with you and tell jokes and be funny and I love that about her,” said Jesse.
Over the past couple years, Taylor has been rapidly losing what little speech she had. She can now only speak one or two words at a time. She’s also losing her mobility and is almost always confined to a wheelchair. It was a quick and alarming decline for the Puyallup fourth-grader who has battled health problems her entire life. But her family never expected she would be one of the few children in the country diagnosed with juvenile ALS.
‘It changes your life instantly’
Jesse, an Air Force Technical Sergeant, thought everything about his infant daughter was perfect. When she wasn’t walking at age one, he assumed she was a late bloomer. When she wasn’t walking at 18 months, doctors recommended Taylor see a physical therapist. After a home consultation, Jesse was told Taylor had cerebral palsy.
“It changes your life instantly,” said Jesse of the diagnosis. “It opens your eyes to a world you don’t know.”
Taylor quickly adapted to life in leg braces and kept up with her younger brother. The family grew when Jesse’s fiancé, Maddie Silver, moved in to their Puyallup home and brought her two young sons.
“She used to jump out of bed in the morning with just her crutches and without her braces on and walk down the hallway to come hang out with the boys in the morning,” said Silver.
The big blended family took a trip to Ocean Shores a couple years ago, and Taylor felt the sand between her toes.
“She walked around with her little crutches and she was just fine,” Silver said. “She couldn’t do that today. It just happened in the blink of an eye.”
A new diagnosis
When Taylor began working with her care team at Mary Bridge Children’s Hospital about two years ago, her physical therapist, Meredith Graham Lawver, noticed something was different about Taylor. She didn’t walk or move like her other patients with cerebral palsy.
“I felt fairly certain there was something else,” said Graham Lawver. “Even though she kept coming to therapy, even though the family was working super hard, and she’s a super hard worker, she started to decline.”
Dr. Bob Cooper, medical director for Mary Bridge Children’s therapy unit, also suspected something else was going on, but thought there were several things it could be. He recommended genetic testing.
Genetic testing, while once rare has become more commonplace at Mary Bridge. The children’s hospital has two full time medical geneticists and a genetic counselor, and they are busy. Each year more tests become available, and the costs of testing go down.
But Cooper was stunned when Taylor’s results came back. They revealed ALS, better known as Lou Gehrig’s disease.
“It’s a condition typically of men in their 50’s, not something I had seen in a child before,” said Cooper. “Immediately after I got that, I called my colleagues around the country, and people who had been in practice for 30 years had not seen another child like this.”
There is no reliable data on juvenile ALS worldwide or in the U.S., but it is thought to be a rare, yet underdiagnosed condition.
When Jesse heard the diagnosis, he said he showed no reaction.
“I didn’t understand what it meant,” he said. “It didn’t sink in.”
Silver needed to see it in writing.
“We went to an appointment a few months ago, and there was a printout,” she said. “I just glanced down at it, and it said word for word what the diagnosis was. I said, ‘That’s not what she has. That can’t be what she has. Is that the same ALS that I’ve heard of?’ I couldn’t even fathom that’s what was going on.”
Both Jesse and Silver got their real wake-up call when they met with a psychologist at Mary Bridge, who told them that juvenile ALS was a terminal disease.
“Jesse and I made eye contact, and for the entire day I couldn’t get it out of my head,” said Silver. “That was tough to hear.”
Taylor’s ALS diagnosis is genetic. There is no cure, but her care team at Mary Bridge is treating her functional condition and modifying her environment. They’re using speech therapy to help her swallow and communicate, physical therapy to maintain her muscle strength, and adaptive equipment, like a power wheelchair, to improve her mobility. Taylor also gets Botox injections to decrease spasms in her legs.
“The major nerves that are powering her muscles are shutting down, so the effect of this over time is that her muscles get weaker,” Cooper said.
He said Taylor’s prognosis is unknown, because the disease expresses itself differently in each patient, but she has a long road ahead.
“She’s going to require more assistance – we don’t know when, we don’t know how much and how soon, but her personality and the joy she brings are going to invite people to want to help and be a part of her circle,” Graham Lawver said.
Hero Patient of the Year
Taylor’s infectious smile comes up repeatedly when talking to members of her care team at Mary Bridge.
“She is a joy to be around, she makes the other therapists and the other patients smile,” said Graham Lawver.
“She has many reasons not to be as bright and cheery as she is, and she is determined to have a very normal life. She inspires the rest of us, “said Cooper.
Together they nominated Taylor for Mary Bridge’s Patient Hero of the Year award. It’s an honor reserved for the bravest, most resilient, most hard-working, and most inspiring patient.
At the Mary Bridge Bridge Builders luncheon held at the Tacoma Conference Center on November 29, Taylor’s name was called for that final award of the day. The crowd of 550 rose to their feet for a standing ovation.
Jesse and Silver say Taylor is their hero every day, and they hope her story inspires others.
“No matter how hard your day is, no matter what rough patch you’re going through in life, you reflect on those moments and realize Taylor has it twice as hard as all of us,” Jesse said. “And it’s not as bad as you think.”
How to help
Jesse and Silver are planning renovations to make their home more accessible, including building a wheelchair ramp. Silver has started a GoFundMe page to help them cover the costs.