Scampering about with brother Jake, an overjoyed 17-month-old Cole stops to face parents Mike and Tanya Osegueda at their Clovis home last week and perform a pointy-toed, infant jig.
Four-year-old Jake pauses from pushing a toy truck across the wood floor to take note of this adorable moment: “He really likes that song!” Jake works to keep the dance party going by singing the “ABCs” near the top of his lungs.
Looking at this fleet-footed child with wispy orange-blonde hair playing with his big brother, you’d have no idea that Cole had skull surgery when he was six months old.
The Oseguedas are now giving back to other children diagnosed with craniosynostosis, a relatively rare condition where plates in the skull fuse prematurely.
Surgeons at Valley Children’s had to cut Cole’s head open from ear to ear and remove a piece of his skull to allow room for his brain to grow, ensure he doesn’t go blind and make his irregular-shaped head look “normal.”
As the one-year anniversary of his surgery approaches in September, the Oseguedas held a fundraiser last week at Tioga-Sequoia Brewing Co. in downtown Fresno for Cranio Care Bears.
The group is run by two moms who regularly share success stories about craniosynostosis surgeries on their Facebook page and send care packages to families with children with the diagnosis.
Before Tanya Osegueda, an outreach coordinator at Sebastian Corp., found Cranio Care Bears, she came upon horrifying photos online of worst-case scenarios of children with craniosynostosis.
“I think I laid on the floor for like three hours on a Sunday and I couldn’t get up,” she says. “Mike cried — I don’t ever see Mike cry. It was awful. You just feel like everything is crashing down on you.”
Finding Cranio Care Bears helped turn the tide.
“I thought, ‘OK. Maybe it’s going to be OK,’” Tanya Osegueda says.
The Oseguedas collected a little over $1,000 during Thursday’s fundraiser and raised $760 as of Monday morning through an online donation website, crowdrise.com/cranio, where people can still donate. They hope the donations will help other struggling parents find hope amid fear.
The Oseguedas are floored by their son’s quick recovery. Developmentally, they say Cole is on track and is hitting his milestones like a normal child.
His post-surgery helmet (adorned with skulls and crossbones for coolness, thanks to his dad) to protect his healing skull and direct its growth was removed in April after six months. Doctors told the Oseguedas that Cole won’t need another surgery.
Mike Osegueda, a fomer Fresno Bee columnist and Yahoo Sports blogger, is already thinking about the day he’ll tell Cole about all this when he grows up.
“I’m looking forward to being able to tell him, ‘Hey, you did this when you were six months old so you can do whatever you want, man. You can handle anything.’”
How to help
- Make donations online at crowdrise.com/cranio