Natasha Melgarejo had heard it’s never a good thing when the ultrasound tech leaves the room. She couldn’t remember who told her that, but she knew it was true. This was Natasha’s third ultrasound. The tech inhaled deeply but she never left the room. Instead she did something much worse, sending Natasha and her husband Luis directly to see the doctor. They waited outside his office for an hour before getting some grim news.
The ultrasound tech had discovered a white mass at the base of her son’s neck. More disheartening, the doctor had no idea what it was. Undiagnosed, Natasha was referred to a perinatologist the next town over. The perinatologist was also unable to give the family any new information. About the only thing the family knew after that fateful ultrasound was that they were having a boy. They were going to name him Giovanni after Giovani Dos Santos, their favorite soccer player.
The weeks passed but nobody knew what was wrong with Giovanni. The amniocentesis revealed very little. What the doctors did know, and what concerned them deeply, was that Giovanni was growing fast – way too fast. At 36 weeks Giovanni was no longer able to move around in the womb, he would have to be taken out. Natasha vividly recalled the last thing the doctor told her when they were prepping for the Cesarean, “You should know your son will likely not make it though this birth.”
During the C-section, Natasha heard a cry. Gio was breathing! The nurses whisked Gio away with tubes in his nose and mouth. But there was something very different about this newborn baby. Some of Gio’s fingers were fused together, his arms, legs and torso were deformed. But his face was just perfect, angelic even.
An hour later, the doctor returned with bad news. Gio’s heart had stopped beating not long after birth. The doctor explained that they’d managed to revive the newborn but the prognosis was grim. “Your child will not make it to the end of the week.” And that was that.
Sometimes real hope means believing in something that nobody else believes. Natasha believed Gio would find a way. Gio made it to the end of that week only to be told he wouldn’t make it to the end of the month. The next month found Gio alive, and the next…
After three months, Gio was finally sent home, still undiagnosed. He was home for exactly a week to the day when he stopped breathing. Luis called 911 and started CPR on the fragile child. The ambulance rushed Gio back to the same hospital he’d spent the previous 3 months. The family was told, once again, there was little they could do for Gio. But somehow, once more, Gio started breathing.
The family was referred to UC San Francisco to meet with a specialist who was finally able to diagnose Gio with CLOVES, an extremely rare congenital disorder characterized by a combination of skin, spinal, bone and joint abnormalities. There is no known cure. Children with cloves often develop a fatty mass around their torsos as well as having overgrown arms, hands, legs, and feet. Gio got the worst of it… nearly. For some reason Gio’s infection abated at his neck. Children with CLOVES in the face and brain are unlikely to live past 5 years of age. The disorder spared Gio’s most vital organ, his brain. Gio’s cognitive development would be as normal as any other growing boy.
But the obscure disorder ravaged the rest. Gio was prone to infections in the blood. His immune system is unusually weak. A small cut that warrants only a bandaid for you and I could mean a week in the hospital for Gio. Small clusters form on his skin that can burst at any moment. Gio’s blood is so thin from anemia that, when the clusters break, he can be left sitting in a pool of his own blood in minutes flat.
The first year of Gio’s life was exhausting. Natasha had heard ‘Your son is not going to make it’ more times than she could remember. Each time, her heart pierced with the thought of burying her baby. Each time, Giovanni had beaten death. On his birthday, Giovanni returned to the hospital of his birth for a checkup. The nurses started crying. They couldn’t believe Gio was still alive. Giovanni would likely never play the sport of his namesake, but he had the heart of a winner.
Gio is now 4 years old and he’s one of the most positive children you’ll ever meet. I spoke with Gio’s mother on the phone. When she talks about her boy you can hear her smiling over the phone, “He’s such a happy kid. Gio’s got this contagious laugh. We were Christmas shopping at Kohl’s the other day and Gio started laughing. A man in the next aisle came over and said, ‘Thank you so much. I’m not having a… very good day today. But that child’s laugh made my day.’”
When we speak of many diseases, the focus is typically on the inward effects of the disease – how it takes a toll on the body and mind. Due to Gio’s malformations, there is also a dramatic outward effect on others. Gio’s appearance can sometimes bring out the worst in people. Gio’s mother recalled a trip to Walmart recently. “One ignorant person asked if Gio’s fingers were real. Another child pointed and exclaimed ‘It’s a monster!”
Gio’s parents are fighting a battle on two fronts – both Gio’s immediate health as well as how he is perceived in the world. If you google CLOVES, you’ll find yourself reading about the dried flower bud until anything medically-related finally appears on the second page.
The Melgarejo family lives in a small town of Carson City and they’re trying to get the word out now by giving local media interviews and access to Gio. They believe if they can educate the parents in their small community they’ll be able to teach their kids to treat Gio like a normal child, “Gio is still a person. He’s got feelings. We want people to get to know him.” Knowledge will lead to understanding, and understanding leads to compassion.
Gio is young but he knows he’s different. The other day on the playground a little boy was pointing at Gio, he seemed frightened. Gio walked right up to the boy and smiled, “Hello I’m Gio. Would you like to play with me?”
Gio’s medical needs are extensive. Gio’s hands are so distorted he’s unable to manipulate anything with them. Gio needs reconstructive surgery on his hands and feet. As time goes by, it appears more and more likely that amputations will be needed, particularly on his fingers. The medical costs and travel to the specialist in San Francisco have piled up quickly.
Gio’s legs continue to grow rapidly, the deformities now so profound he’s sometimes confined to a wheelchair. When he does walk, Gio uses specially fitted shoes. Gio needs a new wheelchair and a new pair of kicks, both of which the Chive Community will provide. Even Gio’s doctor took the time to write us. In her letter she stated. “Giovanni is a delightful boy with a wonderful, caring family. Any help would be appreciated.”
Help will come today in the form of a $25,000 grant from Chive Charities (grant already made). This year, our donors to Chive Charities have changed so many lives for the better. Today you’re helping one of our most special cases.
Hopefully Gio’s appearance today on theCHIVE will also help raise valuable awareness for CLOVES. I asked Natasha if she had a message for the Chivers. “The most valuable thing you can provide is awareness. Share Gio’s story. Talk about CLOVES with your friends.”
Time and again, theCHIVE community has been able to thrust obscure disorders into the the spotlight and we have a chance today to make CLOVES a national talking point and help ensure that Gio and others like him will not live their lives as outsiders. We can recognize the disability but emphasize the possibilities. If Gio can make it past his 8th birthday, the possibility of developing cancerous tumors plummets, and his future grows brighter. The potential to live a long life becomes much more palpable.
So far, Gio has hurdled so many obstacles. By covering the costs of new medications and badly-needed physical upgrades, I have every faith he’ll continue beating the odds. We’ll all be watching your progress here with great interest, Gio.