Randy Weeks may only have half a heart, but there’s no doubt he’s full of life.
Looking into his sparkling brown eyes, you’d never guess the 3-year-old was diagnosed with hypoplastic left heart syndrome — or half a heart — shortly after birth.
The rare heart disease, which is more common in boys than girls, develops before birth.
It has no known cause and occurs when parts of the left side of the heart do not develop correctly.
The left side of the heart has difficulty circulating blood through the body, so the right side of the heart must maintain the circulation for both the lungs and the body. The extra workload can lead to heart failure.
Bounding around the house and hiding under the blankets, giggling, waiting for his mom to find him, Randy looks and acts like any other pre-school child.
“We treat him like he’s a normal child,” she said. “It’s the best thing for Randy. You don’t let him know anything different. He knows he has a bad heart. He says it all the time.”
Because his blood does not have adequate levels of oxygen, Randy turns blue easily from rough play and cold temperatures.
He was diagnosed after birth, when his body went white and appendages turned bluish-purple. He had his first surgery at 8 days old and his second at 6 months old.
His mother, Charlotte Matter, said they’re lucky because unlike many other children, there haven’t been any major complications with Randy’s condition.
“He’s having his third surgery Thursday at the Cleveland Clinic,” she said. “It’s a three-part process to get him going. We have confidence he’ll make it through his third because he’s already made it through the first two he’s had. He’s so full of life.”
Randy’s surgery involves connecting veins carrying blue blood from his body directly to the blood vessels that lead to the lungs. His heart will then have only one pumping chamber.
During the six-hour surgery, a second stint will be placed into Randy’s aorta to allow oxygen to flow freely, Matter said.
Looking forward to his fourth birthday in May, Randy excitedly pointed out his favorite cars and his mom’s birthday flowers as he jabbered about his trip to the dentist. He has a new overnight box with a coloring book, movies he’s not allowed to watch until his hospital stay and a special Diego blanket.
“Go, Diego, Go!” on Nick Jr. is his favorite television show.
“This is for my hospital,” he said. “But it’s not Christmas. These are movies for my hospital. Can we go to the hospital? They give me chocolate milk.”
Matter will make the drive she says she could do in her sleep on Thursday for Randy’s pre-surgical procedures.
“We try to psych him up for the hospital, tell him we’re going to the coolest hospital in the world,” she said. “We have the best doctors in the world. That helps.”
Though Medicaid insurance is a big help with the surgical costs, Matter said time off work is going to be a strain, considering Randy could be in the hospital for two to six weeks.
“I don’t know what I’m going to do for the three weeks I’m off of work,” she said. “But I just take it one day at a time. Not knowing what’s going to happen is nerve wracking ... and trying to keep all the money straight.”
When asked to describe her son, Randy jumped right in.
“I wear Pull-Ups,” he said proudly. “My name is R-a-n-d-y.”
Matter, who gives her son four medications a day and visits the hospital almost monthly, said it’s hard knowing she could lose her “wild child” — but she has faith he’ll come through.
“He’s going to be glowing by time he’s in his 20s, I swear,” she said of his many X-rays. “They say he’s a little bit slow, but I say he’s a little bit stubborn ... We’re doing this to let him live.”
Want to help?
What: Spaghetti Dinner benefit for Randy Weeks
Where: Holy Angels, 428 Tiffin Ave., Sandusky
When: April 12
Time: 11 a.m. to 6 p.m.
Cost: $8 for adults and $4 for children
Donations in the name of Randy Weeks can be made at U.S. Bank, 205 W. Perkins Ave., Sandusky.