When Kim Fonseca began thinking about how to celebrate her daughter Lyla’s birthday this year, she knew two things for certain: she wanted it to be simple, and she wanted it to matter. Life with Schaaf-Yang syndrome (SYS) brings intense days — therapies, medical care, work, and the everyday swirl of family life — so planning a major event wasn’t realistic. But Kim felt a strong pull to do something that could help her daughter and every child living with SYS.
What happened next was beyond anything she expected.
For years, a local pumpkin patch had been a special place for the Fonseca family. Kim reached out to the owners to ask if they ever supported charitable causes and shared with them the urgent, promising research happening in SYS — research that could meaningfully change the future for kids like Lyla.
They took a vote.
And, as Kim shared, they “unanimously decided to be Team Lyla.”
The pumpkin patch owners proposed an idea: they would donate a portion of all proceeds from the entire day of Lyla’s birthday to FPWR. All Kim had to do was invite friends and family to join in the celebration.
“It was exactly what I hoped for — laid back, fun, and meaningful without a ton of planning,” Kim said.
The day itself was filled with joy, color, and the kind of community support that lifts a family’s spirits in ways words can hardly capture.
Friends and family arrived from near and far. Those who couldn’t attend gave directly — and their donations alone surpassed the funds raised at the pumpkin patch. Lyla’s best friend and SYS sister, Emery, surprised the family by arriving with her parents, making the day even more special.
“The response was more than I ever expected,” Kim said. “Old coworkers, friends of friends, distant relatives, families from my boys’ school — so many people contributed. We are so thankful.”
For the Fonsecas, supporting SYS research means so much more than funding progress in a lab.
“It means hope and possibility,” Kim said. The GeneSYS project — the largest research initiative ever focused specifically on SYS — represents a chance for better treatments, better outcomes, and a better future for Lyla and every SYS warrior.
Lyla works hard for every milestone and every accomplishment. Watching her grow has reshaped the family’s outlook in profound ways.
“We can’t do this alone,” Kim shared. “We’ve leaned deeply into our faith. It’s made us stronger. It’s made us so aware of what we take for granted. Every day is a gift, and there is always something to be grateful for.”
For families who may be considering hosting a fundraiser but feel overwhelmed, Kim offers simple, empowering advice:
“Our children are a blessing, and we have the power to make their journey easier. Don’t let not knowing where to start stop you from doing something. I had no clue where to begin. I just asked the venue if they had ideas — and they came up with the rest. Anyone can do it; it just takes your yes.”
Kim’s yes turned a birthday party into a celebration of community, generosity, and determination — a day that honored not just Lyla’s life, but the future she deserves.
And thanks to families and friends who keep showing up with love and courage, that future grows brighter every day.
Learn more about how you can take action and make a difference for SYS research!