NORTH KINGSTOWN, R.I. (WPRI) — The youngest of Kayla and Josh Robinson’s three kids is the one they all look up to.
“He’s amazing,” Kayla said. “He’s our hero. The kids say he’s their hero.”
Treyvon Robinson is only 18 months old, but his show of strength started just five days into his life on this earth.
“Our whole world crashed in a matter of an hour,” Kayla said, recounting the day vividly.
A doctor appointment for what they thought was a heart murmur, landed them in an ambulance, in a race to save Treyvon’s life.
“We had to rush to Boston and learn within 48 hours that he’d have to have this surgery or he wouldn’t survive,” Kayla said. “I sat in the front. I had just had my c-section five days ago. I was crying and crying and crying. I didn’t know if he’d survive.”
According to the Centers for Disease Control (CDC), 1% of all babies born in the United States each year, which is approximately 40,000, are affected by a congenital heart defect. Treyvon is one of those kids, born with one of the rarest forms.
Most people are born with two ventricles, but Treyvon only has one. He was also born missing a main heart valve, and had other complications. He’s had two open heart surgeries so far, with one more to go.
“This kid, he just rocks right through it. Open heart surgery? No problem,” Kayla said.
It’s not so easy for Kayla and her husband, though. When you’re the parent of a kid born with a congenital heart defect, a cold isn’t just a cold.
“We get nervous with a cold,” Kayla admits. “A cold can go to his heart. I get scared because some things can end him up in the hospital.”
It’s a fear that was made even more real by the loss of a close friend in February, a little girl named Hannah, also born with congenital heart defects. She was only 1 year old.
“It hit home because her mom, we became best friends. We got close through this journey,” Kayla said.
This month, the Robinson family is walking for Hannah, and every other child born with congenital heart defects in the 9th annual “Keep the Beat Walk” in Danvers, Massachusetts.
“The more money we raise, the more CHD research, the more kids are going to live,” Kayla said. “There’s going to be better treatments. Hopefully, later down the line, there’s going to be a cure.”
Treyvon, the brave little boy with a head full of curls, is their inspiration for every step, because he may be small, but he’s very strong.