Unexpected hope

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Carmen Ulloa never imagined she’d ever walk, but with a little help from Kiwanians, her potential is limitless.

Story by Ariana Gainer
Photos by Jack Brockley and Ariana Gainer

Three teenage girls, their homework finished and set aside, prepare to do their favorite activity: go to the beach. But before they leave, Angie Bone and Mariuxi Palacios braid Carmen Cecilia Ulloa’s hair. They giggle and whisper about some of the boys from school. Carmen’s home—a cinder block structure decorated with her father’s fishing nets—is only two blocks from the Pacific Ocean; so Angie and Mariuxi walk as Carmen pedals between them on a hand-propelled tricycle.

When they arrive, Angie queues Miley Cyrus and Black Eyed Peas songs on her phone. The girls sing along. Carmen lies back in the sand as her friends draw butterfly wings with elaborate details around her. It’s beautiful. Surely they’ve practiced this many times before. After they’ve completed the butterfly masterpiece, Angie draws a heart in the sand while Mariuxi writes Carmen’s name inside it. Then, Angie and Mariuxi help Carmen up and support her so she can stand—if only for a moment. And walk—if only for a few steps. And smile for the camera.

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The love and care Mariuxi and Angie have for Carmen is so evident. In the midst of all this, Carmen just smiles and giggles, as usual, unsure how else to react to this new sensation of being the center of attention.

Carmen is a happy girl, very sweet. She’s soft-spoken, but not really shy. She has a quiet voice, but she has a lot to say. Her smile is reserved at first, but the longer you talk with her, the wider it gets. She lives in the Ecuadorian province of Esmeraldas, in a town called Atacames.

Carmen cannot walk on her own. Not yet.

Carmen’s a lot like many other 15-year-old girls. She likes to read. She enjoys music. Her notebooks are covered in doodles and magazine photos of American boy bands.

But she’s also a little different. She was born with a condition called arthrogryposis, meaning her muscles, tendons and soft tissue are weak, shortened and deformed. When Carmen was born, her hands and legs were turned inward, so she was unable to extend them. This prevented her from performing everyday activities on her own, including walking, writing, brushing her hair, bathing, eating and dressing. That’s why she uses a tricycle to get around, and why her friends lovingly braid her hair.

Several years ago, Carmen never would have had the confidence to go to the beach. But thanks to a group of dedicated Kiwanians, Carmen’s future is much brighter.

Some day, she knows, she will walk.

“I was at the beach with my dad, and this architect said that he could help me. He said there were doctors who could fix my hands and legs and someday I’d be able to walk.”

The architect
About seven years ago, Carmen was at the beach with her father, Alirio. Her condition prevented her from playing in the sand. She could only crawl, and it was extremely painful for her. She wanted to draw in the sand, but she couldn’t use her hands. So she mostly just sat and watched the other kids—some of whom were her friends—playing and swimming and drawing pictures in the sand.

A man at the beach that day noticed Carmen struggling to crawl. She wore sandals on her knees and used the back of her wrists to move forward. The man walked over to Carmen and her father and introduced himself as an architect who knew of an organization that could offer her medical help and possibly correct her condition.

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“I was at the beach with my dad, and this architect said that he could help me,” Carmen recalls, the incredulity she felt that day still visible in her expression. “He said there were doctors who could fix my hands and legs and someday I’d be able to walk.”

That architect was Ricardo Moncayo, a member of the Kiwanis Club of Equinoccial de Quito, Ecuador. He was staying in the area and happened to visit the beach on a rare day when Carmen ventured out of her home.

Now, seven years later, Moncayo and Carmen are still very close. He lovingly twists her ear and teases her when he sees her.

The Equinoccial Kiwanis Club partners with Metrofraternidad, an organization founded in 1986. It is dedicated to providing free medical care to low-income patients, especially those with complex conditions like Carmen’s that require surgery to correct. To function, Metrofraternidad relies on the support of the Metropolitan Hospital, a network of hospitals in Quito. The hospital provides the Metrofraternidad doctors with the necessary medical equipment and facilities to treat patients and perform operations. In a triune partnership, the hospital provides the resources, Metrofraternidad provides the doctors and the Kiwanis club leads the doctors to needy families who would benefit from their services. Carmen’s was one of those families.

When Carmen’s father, Alirio, met Moncayo, he was skeptical about his offer of assistance. Alirio works as a fisherman, making about US$100 a week. He figured “free” medical treatments were just too good to be true. Regardless, he kept Moncayo’s contact information and shared it with his wife and Carmen’s stepmother, Luz, whom everyone calls Doña Luz as a term of endearment and respect.

Doña Luz saw hope. Without Alirio’s knowledge, she took Carmen to Quito at Moncayo’s suggestion, where she met Gonzalo Uquillas, a trauma surgeon and a member of the Kiwanis club; and Alejandro Rubio, a plastic surgeon. Both doctors work for Metrofraternidad. It was during this trip to Quito about seven years ago that Carmen had her first surgery—the first of six thus far.

“(Carmen’s condition) affects her only physically—in her nervous system and her extremities,” Uquillas says as he contorts his hands to demonstrate. “She is very intelligent; a bright young woman with a bright future and an even brighter smile.”

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Black and fuchsia hearts
The Ulloa family lives in a modest house. With orange exterior walls, it opens into a long pale-green room that serves as a family room, dining room and kitchen. Off to the side are unfinished rooms used as bedrooms and storage. The roof is covered with bamboo shoots and sheet metal. It’s located on a quiet dirt road.

Through the back door is a detached addition. Manuela Espejo, an organization that arranges assistance for persons with disabilities, built the structure with a small bathroom and bedroom for Carmen so she could move about more freely on her tricycle. She now also uses a walker that her doctors gave to her when she first began to walk. Now, she’s an expert at maneuvering through the front living room to the kitchen and back to her own room, which is colorfully furnished in yellow and blue with a metal-framed bed, a chair with floral upholstery and a dresser. On the dresser rest several school notebooks with doodles of hearts on the outside covers.

Carmen sits on her bed, picks up a notebook and, in her quiet voice, begins to read something she’d written earlier to practice her English. “Hi. My name is Carmen Cecilia Ulloa,” she says. “I am 15 years old, and my favorite colors are fuchsia and black.” Beside her is her backpack, the one holding her homework and more notebooks. True to those favorite colors, it is black and fuchsia with embroidered hearts.

“Carmen’s condition affects her only physically—in her nervous system and her extremities. She is very intelligent; a bright young woman with a bright future and an even brighter smile.”

No longer a distant hope
These days, Carmen can do many of the activities she once believed impossible. One of her favorite accomplishments is improving her handwriting. She loves to show it off. Curving her left hand over a notepad, she writes with meticulous grace: “Me llamo Carmen Ulloa. Soy la Señorita Deporte.” It means, “My name is Carmen Ulloa. I am ‘Miss Sports,’” a nickname her friends gave her now that she can participate in sports using her walker.

Haydeé Alvarado is the president of the Equinoccial Kiwanis Club. She and her husband, Mario, also have been involved in Carmen’s treatment and they frequently stay at Moncayo’s home-away-from-home in Esmeraldas to visit Carmen.

“Carmen’s mother left when she was young, so Doña Luz has done so much for her and loves her as her own daughter,” Haydeé says. “And we are like her aunts.”

The club has about 22 members, but in reality, there are probably hundreds of people supporting Carmen and children like her.

“All of our families are involved in all that we do with Kiwanis,” says Patricia Moncayo, Ricardo’s wife. “Our children, grandchildren, husbands, wives—everyone has a part in what we do.”

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In everything the Ulloa family says, their gratitude is evident.

“I want everyone to know I’m doing well, and I want to thank them for their support,” Carmen says.

Her father smiles and adds, “Most of all, I’m happy that she has people to support her. Because of that, now she has a future. She really can reach her dreams. It’s not just a distant hope anymore.”

Playing on the beach with her friends is no longer a distant hope for Carmen. Like the butterfly her friends drew in the sand, she’s emerged from her surgeries with hope and excitement about her new life.

Once, she preferred to stay inside, at home. Now, she eagerly and easily goes outside, especially to the beach. Now, she’s not crawling painfully or watching her friends from afar. She’s smiling and laughing and playing with them. Her two best friends remain Angie and Mariuxi. The pair, Doña Luz says, have supported Carmen since they were little girls. Time has fortified their friendship, and they’ve been at her side through every surgery.

“I want everyone to know I’m doing well and I want to thank them for their support.”

The same is true about the Equinoccial Kiwanians.

Carmen currently is in rehab to help her gain full use of her limbs. Additional surgeries present risks, so time will tell whether she undergoes any more. But as soon as she’s completed her rehab, Moncayo promises her a dance, sometime before she graduates from high school in two years. She smiles at the thought. Her biggest smile.

She’s looking forward to that.

This feature originally appeared in print in the January/February 2016 issue of Kiwanis magazine.


Video: To watch, click on the photo below.

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Photos:

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