NORTH KINGSTOWN — Three years ago North Kingstown resident Kayla Robinson received news that no parent wants to hear.
Her son Treyvon was diagnosed with complex Congenital Heart Defects. She couldn’t believe the news.
“My first reaction was total shock! How could my ‘healthy baby’ have so many life threatening issues with his little heart,” Robinson stated.
At just seven days old Treyvon underwent his first open heart surgery, and that was just the beginning of it. At four months old Treyvon underwent his second open heart surgery, and at two years old he had his third open heart surgery.
Despite this Robinson said that Treyvon is now a thriving three year old who has a single ventricle heart.
“Now when I think about his defects I think of just how strong Treyvon is. I am so proud of all he has accomplished in his short life so far,” Robinson said.
Robinson explained that they wanted to help bring awareness to CHD — which kills more children every year than any form of childhood cancer — and they have been able to do just that in a number of different ways.
“Bringing awareness to CHD, which is the number one defect in the US, means a lot to our family,” Robinson said. “We hope by spreading awareness and raising money that there will one day be a cure.”
Every year the month of February is a way for people to spread awareness about CHD. However, like everything else in the last year, that they had to make changes to their normal events, Robinson explained.
For example, normally local businesses lend a hand by helping with a toy drive but due to COVID-19 that changed. This year, instead, they were able to find a few local businesses who put CHD awareness decals designed by Robinson up in their windows during the month of February.
The North Kingstown Police Department is also helping to spread awareness by wearing CHD pins and helping to raise money through its Facebook page. Robinson said that the money raised will be donated to Child Life on the cardiac floor at Boston Children’s Hospital where Treyvon receives all his care.
In addition to the help from the local community, the General Assembly also passed a resolution making last week Congenital Heart Defect Awareness Week in Rhode Island.
One of the sponsors of the resolution was Freshman State Senator Alana DiMario, who represents North Kingstown.
“I was proud to cosponsor the Resolution Recognizing Congenital Heart Defect Awareness Week because raising awareness brings better policy and more needed funding for issues like this. About 40,000 babies are born each year with a congenital heart defect, and in my work supporting new mothers I have had the privilege to get to know some of them,” DiMario stated. “Many of those infants need immediate surgery after birth. This means their parents are adjusting to life with a new baby and having to navigate all of the challenges of the additional medical care for their child. We need to find ways to help them as much as we can.”
Despite his battles Robinson said that Treyvon continues to push through with a smile on his face.
“Treyvon is a very happy three year old. He loves playing with sand and running around. He is very close with his older siblings and admires them,” Robinson said. “Treyvon also has Autism which he was diagnosed with a year ago. But he doesn’t let any of these medical diagnoses slow him down! He stays active and happy every day with so much love to give. Treyvon is a true miracle!”
Updates about Treyvon can be found on the Facebook page “Team Treyvon.”