Helen de Bonilla signs with her adopted son, Alex.
By Brian Messenger
Helen de Bonilla had no other choice.
When her adopted son Alex was turned away from a school for the blind because he has multiple disabilities, she rolled up her sleeves and started her own school.
“I couldn’t wait for someone else to do something,” said Bonilla. “My child was growing up. He needed education to open up the world for him.”
Today, Bonilla is the director of FUNDAL, Guatemala’s leading deafblind program serving more than 200 children and young adults throughout the country.
Her story is a testament to the transformative power of parents. In a world where millions of children with visual impairment are denied access to a quality education, Bonilla is part of a global groundswell of parents determined to create their own solutions.
They have formed family support groups, lobbied governments for more resources and even opened their own schools. That’s why family empowerment is a key strategy in Perkins International’s mission to expand and improve blindness education programs around the world.
“There’s no one as committed as a parent,” said Gloria Rodriguez-Gil, Perkins International’s regional director for Latin America and the Caribbean. “It’s their own child – nobody has motivation quite like that. No one can tell their story, or move people like they can.”
You can see that power at work in Guatemala, Moldova and the Philippines. Inspired by the powerful bond between parent and child, three mothers are creating life-changing learning opportunities for thousands of children.
There were supposed to be 10 children at the orphanage on that fateful day, but it was the 11th child that changed Helen de Bonilla’s life.
Alex, 3, was born deafblind and medically fragile. Abandoned inside a public restroom, he was rescued by strangers and brought to the orphanage in Guatemala City.
Bonilla instantly fell in love with the boy.
“It’s the moment I experienced the biggest miracle of my life,” she said.
Bonilla and her husband Jose María soon adopted Alex. It didn’t take long for the family to realize that educating their son would be a monumental challenge.
In 1997, less than a year after his adoption, Alex was turned away from his local school for the blind. The school said it couldn’t educate a child with such severe disabilities.
Bonilla wouldn’t take no for an answer. She contacted Perkins International and was referred to a longtime Perkins partner in Argentina, the National Association of Parents of Persons with Deafblindness and Multiple Disabilities.
“This was the chance I was waiting for,” said Bonilla. “At that meeting in Argentina, I met parents that were going through the same issues. We learned what we could do for our children – and that we could do even more with Perkins’ support.”
And so FUNDAL was born. Bonilla started the program out of her home with no formal background in special education and just one teacher and two students. But there was a demand for multiple disability services in Guatemala and the program soon began to grow.
“I was the principal – but I was also the bus driver,” said Bonilla. “I cleaned the children, fed them snacks and brought them to the hospital when they were sick.”
Today, FUNDAL provides vital services to children with multiple disabilities and visual impairment at three schools across Guatemala. The program works with Perkins International to train teachers from across the region, and even collaborates with the national Ministry of Education to promote inclusion and protect the rights of individuals with disabilities.
Though Alex is now a young adult, Bonilla recalls what it’s like to be the parent of a young child with visual impairment, overwhelmed and desperate.
She’s come a long way since then.
“People don’t know me as Helen de Bonilla – they know me as Alex’s mother,” she said. “He is the most famous deafblind person in Guatemala. And I am a very proud mother.”
Valentina Lebedeva still remembers the waves of emotion.
When doctors in Chisinau, Moldova, informed Lebedeva that her newborn daughter Vita was deafblind, the first thing she felt was shock.
Then came the questions: Could Vita live a normal, healthy life? What about going to school? How would this impact their future as a family?
“It was a mix of curiosity and uncertainty,” said Lebedeva.
What wasn’t in question was Lebedeva’s love for her daughter. So when it became clear that high-quality educational opportunities for Vita were scarce, she didn’t hesitate to act.
“The decision to start my own organization came after I realized there was a shortage of institutions that could help deafblind children in Moldova,” said Lebedeva. “There was also very little awareness about deafblindness in my country. I wanted to help fix this.”
In 2003, Lebedeva founded the Association of Deafblind Children and Youth with Multiple Disabilities – commonly known as Association VITA.
The organization has since built a network of about 200 parents while raising awareness about the need for stronger special education programs through advocacy and fundraising events. Perkins International also helped Association VITA schedule teacher training seminars in Moldova’s capital city in an effort to improve deafblind education.
Lebedeva brings an entrepreneurial instinct to the cause of helping children with deafblindness. As the owner of several beauty salons, she uses her business network to build partnerships and raise money for Association VITA’s work.
“She knows how to use her connections,” said Dennis Lolli, Perkins International’s regional director for Eastern Europe and Eurasia. “And it’s making a difference.”
In the future, Lebedeva hopes to open a deafblind rehabilitation center in Chisinau. Her ultimate goal is even more ambitious – she wants Moldovans to change their perception of people with disabilities and realize they’re fully capable of living productive lives.
She sees proof of this every day with Vita, who’s now 18 and taking piano lessons.
“Vita is a very happy and hardworking young lady,” said Lebedeva. “She loves to communicate through music, art and dancing. My daughter makes me proud.”
Marie Alonzo smiles when she talks about her son.
John is 28, totally blind with intellectual disabilities, and lives a happy, fulfilling life in Manila, Philippines. But tears well in Alonzo’s eyes when she thinks back to the early years, when John was just a baby. She remembers the tough times her family faced.
“There was no parent support group,” said Alonzo (pictured above, inset headshot). “My husband and I felt all alone. Sometimes you simply want someone to talk to, or a shoulder to cry on.”
It’s common for parents of children with visual impairment to feel isolated, especially in developing countries where disability often remains stigmatized.
Against this backdrop, a small group of Manila parents came together in 1999 to form Parent Advocates for Visually Impaired Children (PAVIC).
Perkins International was there from the beginning, offering parent trainings and technical support. Today, PAVIC is a force across the Philippines. With membership swelling to more than 700 parents, the group has spearheaded a variety of innovative programs and trainings for students, parents and teachers.
PAVIC has also helped reshape national education policy by raising awareness of their children’s unique learning needs.
Alonzo, a longtime PAVIC member and its former president, currently manages parent and teacher trainings for the group in conjunction with Perkins International.
“Perkins has done so much for us,” said Alonzo. “To think this all started with parents wanting someone to talk to. But over the years we have really grown. We are so proud.”
One of PAVIC’s most popular programs is its annual sports day. The event, which introduces children with visual impairment to physical education, receives widespread media attention and has grown from just a few classes to more than 200 students each year.
In 2016, sports day organizers decided to try something new – mountain climbing. With the aid of professional mountaineers, eight teenagers who are blind climbed Mount Pico de Loro, a dormant volcano with a summit more than 2,000 feet high.
The group’s ascent started at 5 a.m. By midday, Alonzo recalls how a 13-year-old boy named Timothy was lagging behind.
“We weren’t sure if he was going to make it to the top,” said Alonzo. “But he was the one who ultimately said to his guide, ‘Let’s go. Let’s climb.’”
When he finally made it to the summit, Timothy was showered with cheers.
To Alonzo, that triumphant moment encapsulates everything PAVIC stands for as an organization – coming together to reach new heights.
But she said PAVIC’s journey is just beginning.
“We never thought PAVIC would be doing so much, especially at the national level, because we were such a small group,” said Alonzo. “But we’ve grown and the tasks that we’re taking on are much bigger. We’re still climbing. There are still many things to do.”
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