Stricken with a rare genetic disorder, 6-year-old Gwendolyn Strong has never been able to speak and can’t even breathe on her own — but she is determined to sing for her daddy today, Father’s Day.
Bill Strong, 37, hummed “The Muppet Show Theme,” pausing after a verse to let Gwendolyn pick up the melody. For a moment, the only sound is that of her ventilator, but then Gwendolyn started to tease a tune out of a series of grunts, whimpers and squeals.
She not only captured the rhythm but evoked the meaning of the lyrics, “most sensational, inspirational, celebrational …” prompting mother Victoria Strong to reward her with a kiss on the forehead
Gwendolyn has spinal muscular atrophy Type 1, which is like Lou Gehrig’s disease — but in babies. The number one genetic killer of children under age 2, it causes neurons in the spinal cord to waste away until the ability to move, eat and breathe is lost. There is no cure.
“When she was diagnosed at about six months, we were told, ‘I’m so sorry, there’s nothing you can do, just take your baby home and love her,” Bill said.
The family was devastated but rallied, with Bill leading the charge.
“Bill saved us, because I could’ve easily fallen apart,” Victoria said, her eyes filling with tears. “I just wanted to stay home, close the curtains, and not do anything, but I vividly remember Bill saying, ‘You know, whether we have six months, or we have six years, this is Gwendolyn’s one life, and we’re going to make it a good one.’”
Six years later, Gwendolyn has not only blown past the average life expectancy for those with SMA, but is enjoying a full life.
Even though she can move only her eyes and her index fingers — nothing else — her mind is not affected by the disease. Gwendolyn has been able to read books, watch movies, attend concerts, go swimming and sledding, travel cross-country in an RV, and visit Disneyland, often with Bill carrying her or pushing her wheelchair.
“There’s nothing holding her back,” Bill said. “She’ll do anything.”
Gwendolyn’s latest challenge: First Grade. She was the first in her class to memorize all her sight words but, more importantly, was able to make friends. Her classmates figured out a way to communicate with her — in that special way that children do — and they hold hands, hug, read and play together.
“On the last day of school, they played hide-and-seek and even the office got involved, covering her in file folders,” Victoria recalled with a laugh. “Even with all of her disabilities — and they are severe — she’s still 6 and wants to have fun.”
When Victoria became pregnant and gave birth to Eleanora last year, much of Gwendolyn’s care fell to Bill. Every day, he gets up at the crack of dawn to prepare everything she needs, feeds her, massages her and takes her to school. With his laptop, he tries to work while sitting on a bench outside her classroom, or in a coffee shop across the street.
Bill, who was born and raised in the San Fernando Valley but now lives in Santa Barbara, used to be the chief financial officer for several startup tech companies backed by IdeaLab in Pasadena. He eventually founded his own firm, but work became less of a priority when his firstborn was born with a terminal illness.
“Of course, it would be nice to continue to achieve things career-wise but, when I’m taking my last breath, I know the last thing on my mind won’t be my bank account but these moments with our children, and how we took a really challenging situation and made the most of it — not only for ourselves but for others,” Bill said.
Together with Victoria, Bill created the Gwendolyn Strong Foundation, which has raised $1.5 million to raise awareness and fund research on SMA, and donated hundreds of iPads that help SMA patients communicate better.
Bill also invented an app that helps those with SMA communicate using iPads, iPhones and iPods, and fought fiercely for legislation — including the Affordable Care Act — to help families secure health care.
Their Facebook page and website are full of messages from people all over the world, saying thanks for helping them and inspiring them.
“Most caring and amazing people who continue to make a difference in all of our lives on a daily basis,” said one post. “This is such a blessing you give our kids,” said another.
“We’ve resigned ourselves to the fact that we’re going to lose our daughter to SMA,” Bill said. “What that’s allowed us to do is focus on the fact that she is an amazing little girl, and my job as a dad is to figure out ways how to make the time that she has amazing for her.”
“I feel like it will help Victoria and me afterwards … when Gwendolyn’s no longer here … knowing that we had given her the best that we could.”
To donate to the Gwendolyn Strong Foundation, go to their website: thegsf.org