COEUR d’ALENE — In her three years of life, Grace Sayler has defied the odds. 

She received what appeared to be a hopeless diagnosis as a newborn: Noonan syndrome, a rare condition that caused her to develop early hypertrophic cardiomyopathy, an abnormal thickening of the heart muscle. The condition is often fatal in infants. 

Doctors told Grace’s parents that no research on the condition had been conducted in 20 years. Nothing could be done to save Grace, so her family should focus on enjoying their limited time with her. 

Her mother, Honey Sayler, refused to give up. 

There was hope, Sayler discovered, in the form of a chemotherapy drug being studied for children with Noonan syndrome who develop early hypertrophic cardiomyopathy. 

“If we had known earlier, perhaps we could’ve started the treatment sooner,” Sayler said. “Our daughter is at a crossroads now.” 

Even as they celebrated Grace’s first birthday, the family was on pins and needles. 

“None of us thought she would be alive,” Sayler said. 

The family’s two older children wanted to plan a party for Grace’s second birthday. Sayler said she was at a loss for how to explain to them that their baby sister might not live to see that day. 

But Grace made it to her second birthday. The risk of sudden cardiac death decreased significantly. 

“We kind of thought we’d get to keep her in this world,” Sayler said. 

In July, Grace turned 3. 

“She’s the most loving and caring little person,” her mom said. “She’s a gentle soul, but she’s also very silly. We just want her to have the best life and the longest life.” 

While Grace is currently stable, she can’t take the chemotherapy drug forever because of damaging effects to her kidneys and liver. When doctors attempted to taper her off the medication this spring, her heart failure worsened almost immediately. 

Another attempt will be made next spring. If Grace’s heart failure worsens again, her options will be limited. 

“I’m very concerned, as a mother, because I’ve had to fight so much for her,” Sayler said. 

One of those options may be a heart transplant. But nothing is guaranteed.

“Babies and toddlers die waiting for hearts,” Sayler said. 

Sayler said she was reluctant at first to share her family’s story with the community. 

“It’s easy for me to tell my friends to accept help, but for me to accept help is really hard,” she said. “But I just know we can’t do this without the community’s help. There’s nothing I wouldn’t do for my daughter.” 

It was a friend, Conda Mitchell, who encouraged Sayler to speak out about her daughter’s journey. Mitchell said she met the Saylers after a child in her life learned to read at Sayler’s business, Hope Education Consulting in Hayden. 

“Honey is an amazing person,” she said. “(The Saylers) are very close-knit and very loving.” 

Sayler said she gave her business its name because she wanted to give hope to parents whose children were struggling. Now, she said much of the support her family has received has come from the families of children she’s helped through her work. 

“Hope has kind of saved me,” she said. “It just gives me goosebumps thinking of how many kind people we have in our community.” 

The Saylers have launched a fundraising effort — not for their family’s immediate needs or to cover medical costs, but to support research into Noonan syndrome and alternative treatments that could help children like Grace survive and thrive. 

“This money is earmarked only for research that could save our daughter or children like our daughter,” Sayler said. 

Tax-deductible donations support the research of Dr. Bruce D. Gelb, a cardiologist and genetic researcher at Mount Sinai in New York City. Sayler said Gelb has been instrumental in saving Grace’s life and his collaborations with Spokane-based cardiologist Dr. Dean Lorimer have been shared freely.

Due to NIH budget cuts, this work can’t continue without outside funding. 

“These cuts aren’t only going to impact our family,” Sayler said. “These cuts impact all families.” 

Whatever the future holds for her family, Sayler said she’s committed to spreading awareness of Noonan syndrome and encouraging parents to advocate for the medical needs of their children. 

“All of our work will never, ever be in vain because there will always be another family,” she said. 

Info: https://giving.mountsinai.org/goto/GraceSayler

    Grace Sayler, pictured with parents John and Honey and siblings Lil and Jack.