Living with CLOVES Syndrome: One Dayton Boy's Special Story

Courtesy of Natasha Melgarejo
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DAYTON, NV - Four-year-old Giovanni Melgarejo is used to the stares and whispers.

"People have asked us if his fingers were fake or if those are real shoes because of the size of his feet," said his mother, Natasha Melgarejo, who is from Dayton.

"And it's not just children. It's also adults. So it's really difficult for us to watch him go through that. As a parent, you get upset, but you have to deal with it."

Giovanni was born with CLOVES Syndrome, which has left him with malformations in his veins, skin and limbs. CLOVES is an acronym that stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi & Spinal/Skeletal Anomalies. His mom says it has been heartbreaking.

"Sometimes he can't get up because he's in a lot of pain. He has a lot of fluid around his lungs so sometimes it's hard for him to breathe,"said Natasha. "We couldn't find him shoes -- he didn't have shoes for the first two years of his life."

And that life hasn't stopped being difficult. Gio takes eight different medications and braves an injection every day to deal with the swelling and pain.

"We give him Lovenox shots and they burn. And we have to give it to him ourselves. So that's hard because you have your son saying please don't poke me, but we have to because for his health, he needs to be getting all these different medications just to help him get through life," said Natasha.

"Most of the problems that Giovanni has occur because of the size of his arms and his legs and the different vascular malformations that he has," said Dr. David Petersen, a pediatrician at Renown Regional Medical Center who has treated Gio. "So some of the treatments that he has been given are to help decrease the swelling in his arms and legs so he can go live a more normal life."

According to Dr. Petersen, CLOVES syndrome is so rare that only about 100 people in the world have it. Doctors named this syndrome in 2006, but because so little information is available, the prognosis is unclear.

Foggy as the future may be, the parents want people to know about their special boy. He's set to start school soon in Northern Nevada, and they want people to understand his struggles so they don't bully him.

"He was chosen to be this way...maybe to show people that it's ok to be different," said Natasha.

"A lot of times you look at other people and you think they're so lucky they don't have to deal with this," said Luis Melgarejo, Giovanni's father. "But at the same time you feel blessed. You look at your situation and look how much you've achieved, look how much he's grown, and how he's overcome all these obstacles. He's only four-years-old, and he's done so much more than anyone has done."

His medical treatments are painful and expensive; if you'd like to show your support, you can donate to their Wells Fargo account #6198892744 or you can send gauze (which helps alleviate the swelling that causes the enlarged limbs) to the Melgarejos at PO Box 1783 Carson City, NV 89702.