Friends race to raise funds for local toddler

rocco groupFELTON — “I’m Farmer Rocco,” 3-year- old Rocco Hermogenes announced.

His mom, Christy, says that’s what he talks about all day long. “His favorite thing to do is to plow the fields and he’s never plowed the field.”

Rocco may not be a real farmer yet, but he is a survivor.

The soon-to-be preschooler was born with Marfan Syndrome, a connective tissue disorder, according to Ms. Hermogenes.

Rocco Hermogenes, a 3-year-old from Felton who has dealt with Marfan syndrome since birth. Special to The Journal

Rocco Hermogenes, a 3-year-old from Felton who has dealt with Marfan syndrome since birth. Special to The Journal

“When he was born, the doctor said, ‘I know this is not what you want to hear, but he might only live for six months,’” she said.

According to marfan.org, about one in 5,000 people have the life-threatening genetic disorder that can affect how the body develops inside and out. Most of those affected don’t realize it until they are adults.

“Rocco’s heart was already affected at birth which I think is why the doctor said what he did. It’s unusual to have all that present at birth even with Marfan,” Ms. Hermogenes said. “Part of the syndrome makes him super- duper tall. I’m praying he’s under seven-foot.”

Rocco now goes to John Hopkins every three months for treatment with a doctor who specializes in Marfan Syndrome.

“It’s just a waiting game, really. His heart, his aortic root is still growing despite medicines. It’s growing every time we go in. We’d like it to stop growing,” his mom said.

She even had her own aortic root measured. It’s at 2.4 cm. Rocco’s is already measuring 3 cm.

The increased size leaves Rocco at risk for a rupture, a scary thought for the parents of a toddler.

“Think of a brand new rubber band for your hair. It’s nice and elastic. But then you use it and use it… and it loses its elasticity. And eventually, it will burst. In Rocco’s case, he will need surgery before it bursts,” she explained.

The family has not met any other kids living in Delaware with Marfan’s Syndrome, although they find support through an online community to help get them through everyday life.

Rocco now uses braces on his feet because he kept spraining his ankles due to growth problems, Ms. Hermogenes said.

Mom Christy, Rocco Hermogenes and Dad Joel celebrate life. Special to The Journal

Mom Christy, Rocco Hermogenes and Dad Joel celebrate life. Special to The Journal

He also has to wear glasses as, “his eyes are really, really bad. They’re -50. Where do you go from -50? I can’t stop and worry about it because I’ll just worry myself to death. One thing at a time,” she said.

Low muscle tone is also a problem, along with “horrible” balance. Jokingly, she said with a smile, “He’s the klutziest kid.”

Overheating can cause an issue when playing outside or becoming overworked because of his twice a day medications.

“And then he’s always at risk for more problems as he gets older. A lot of people think an open heart surgery will fix him, but that’s just a bandaid,” she said.

“Quite a few Marfan children have had surgeries lately and died a few months later because then their hearts were fixed too good for them.”

The family knows, “it’s always going to be a roller coaster ride with Rocco,” but his mom says she also knows a lot of families have “roller coaster rides” even with healthy children.

To add to their own ride, the family is six-months along with another son.

“We’re excited. We’ve done some testing, and so far so good,” she said happily.

His brother Rocco, an otherwise normal and “typical” boy, said he’s excited to have a sibling.

“He’s monster trucks, fire trucks… it’s all boy, all day. He has a huge imagination. He’s really fun,” Ms. Hermogenes said of Rocco.

 Karen Forrest, 41 of Felton, celebrates running in the Rockin’ for Rocco 5K Walk/Run Saturday morning in honor of 3-year-old Rocco Hermogenes. Special to The Journal

Karen Forrest, 41 of Felton, celebrates running in the Rockin’ for Rocco 5K Walk/Run Saturday morning in honor of 3-year-old Rocco Hermogenes. Special to The Journal

Rockin’ for Rocco to raise awareness, funds

To help raise awareness for Mar fan Syndrome and money for Rocco’s future medical expenses which will include a surgery at some point, friends of the family organized a 5K walk/race held Saturday morning in Felton.

Surgery, although not yet scheduled, will put the family out of work while he recovers.

“I wasn’t expecting a whole lot from this, so when you see the numbers grow and grow, you start to get excited,” Ms. Hermogenes said. “I would like to just keep raising awareness for the syndrome because there’s a lot of people that have it and haven’t been diagnosed. That’s really dangerous.

Jennifer Antonik can be reached at mc@newszap.com

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