Age 5 | Orosí, Costa Rica
Living with EB
“He's the one who gives me strength to keep moving forward.” - Gaby
Gracias te doy:
Por lo que tengo, por lo que soy,
Por el regalo de un nuevo dia,
Por mis amigos, por mi familia,
Por los sembradores, que nos enseño hacer mejores.
I thank you:
For what I have, for who I am,
For the gift of a new day,
For my friends, for my family,
For those who sow the seeds, that teach us how to do better.
Yurguen presses his soft palms together for his nighttime oración, fearlessly looking into the camera as if to make his prayer more broadly heard. The crowded house—not enough rooms for all the kids—is aglow with a television set and bright ceiling lights, a stark contrast to the darkness of the neighborhood streets outside. Yurguen’s eyes reflect the incandescence of the kitchen as the sincerity in his prayers shine through the collective laughter of his three sisters. Together with their mother, Gaby, the family lives in a newly built house, in a small town surrounded by lush mountains and humid sugarcane fields, in the province of Cartago, Costa Rica. For Gaby and her children, laughter and joy go hand in hand with the struggles that have brought them to this new place and come to define their lives.
Gaby, a single mother, has no small task taking care of four children. “I am both their mother and father,” says Gaby. “We struggle to keep this house. We've been here five months. It's been difficult, because I can't work because of Yurguen’s condition. So we look for donations, because the hospital doesn't give us much for him. There isn't treatment and there's no cure for him.”
Yurguen, now five years old, has his legs wrapped in white bandages that have started to peel off from the day’s activities. “The dramatic part of this is having to change his bandages,” says Gaby. “I replace them in the morning, and by night he'll be wounded again.”
Yurguen was born to great excitement in his family, as the first boy. “When Yurguen was born he was normal,” recalls Gaby. “All he had was a blister on his lip.” But after that simple blister refused to go away, the situation became far more complicated than Gaby could have ever imagined. Baby Yurguen was moved to a bigger hospital where he would stay for over a week in observation with sores and a fever that no one could explain. “Then they did a skin biopsy,” explains Gaby. “We got the diagnosis of Epidermolysis bullosa simplex (EB).”
“Soy un niño que piedre mi piel,” states Yurguen. I am a child who loses my skin. “Soy un niño mariposa.” I am a butterfly child. Affectionately, known as butterfly children, sufferers of EB, especially in Costa Rica, have few resources to help them.
“I didn’t know that his father carried this illness,” says Gaby. After Yurguen’s diagnosis, his father left, never to return. “His father rejected him because of the disease.” Gaby struggled to make sense of the situation and provide the very real necessities for her and her family. She had no income and few resources.
“Here in Costa Rica, EB is not very well known,” says Gaby. “Our families would love to receive supplies and treatments, because we don't have them here.” She set up a Facebook page to gain support, and asked the hospital for supplies. She now gets gauze, needles, nutritional supplements, petroleum jelly, and antibiotics from the hospital once a month, but still has very little access to other needs like medicated skin creams and tubular bandages.
Despite the immense challenges facing Yurguen, one would be hard-pressed to not get caught up in his exuberant joy. He exclaims about his favorite thing to do at the playground: “Las hamacas!” says Yurguen—the swings—as he jumps around rambunctiously, rushing out of a concrete tunnel and back into the daylight. The swings entertain him well enough, but the game he adores most is fútbol. “What he loves is soccer,” says Gaby. “He wants to be a soccer player.”
Soccer was not initially in the cards for Yurguen. “The doctors said he would spend more time in the the hospital than at home,” recalls Gaby. It was unclear what his physical abilities would amount to; whether he would ever be able to run and play sports with the rest of the kids. Yurguen defies these expectations daily, and is willing to take risks and build his strength. Gaby tries to teach her rambunctious son how to take care of himself and what it means to live with EB. “Sometimes I spend two to four hours treating his open wounds,” says Gaby. “Then, I'll put the bandages on, and right after, he'll be outside playing soccer.”
As Yurguen explores the playground, little seems to inhibit him. “Cuidate, cuidate,” yells his mother as he plays. Be Careful. “I try to just let him be outside, and in the world. I try not to restrict him. So he can know everything, and take care of himself.”
Part of this process involves making sure Yurguen attends school, despite the difficulties that presents. “He likes school a lot,” reports Gaby. “He has a great teacher, and great classmates. His teacher knows about his condition, but a lot of people don’t.” Sometimes other kids have picked on him at school, leaving his skin damaged and bleeding. Despite the stigmas that come with having such a visibly present difference, Yurguen continues to make friends and change people’s minds.
Gaby is infinitely proud of Yurguen, who is an incredible inspiration to her. “I could say so many things. For me, he is everything. He got me out of the whole that I was in. That's why I'm here, for him. He's the one who gives me strength to keep moving forward. I love him so much.”
“Tengo una...una…” Yurguen interjects, as he has throughout the evening to tell his mother something, or to simply give her a hug and dash back outside to play. “Tengo una sobre el niño que hace karate!” I have one about a kid who does karate. He wants to show off his collection of superhero videos, and he’s bouncing around and shooting webs like Spiderman—his favorite—seemingly defying gravity at every possible moment. Gaby has been oscillating between laughter and tears for most of the night, but she brightens as Yurguen hops over to her and plants a kiss on her cheek. His superpowers in action.