When Martha went into labour to deliver her first child eight years ago, she had no idea of the challenges she would face. But at the same time, she couldn’t have foreseen the absolute joy her soon-to-be born child would bring.
Baby Mauro entered the world to a less than easy start. He was kept in hospital for several days before going home with his mother and father, Wilson, once the hospital staff thought he was well enough. Martha’s initial joy over her new baby soon turned to fear. Something wasn’t right. Mauro didn’t cry like the other babies she knew. He never wanted to breastfeed, and when she picked him up his legs and arms hung limp.
Concerned, Martha and Wilson began seeing as many doctors as their limited resources could afford in order to discover what was wrong with their precious child.
“Several doctors confirmed that Mauro had cerebral palsy and they said he would always be a vegetable,” says Martha. Doctors said asphyxia at birth was to blame for Mauro’s condition.
Though she knew something wasn’t right, Martha refused to believe the doctors’ prognosis. When Mauro was eight months old, his parents took him to a local foundation for another evaluation. Through physical therapy and early stimulation exercises, Mauro started to develop his atrophied arms and legs and began to improve his language skills.
The progress they saw encouraged them because it contradicted the dismal prognosis they had been given. Eventually, though, it became increasingly evident that Mauro would need several operations to correct his hip dislocations and straighten his feet.
Her heart sank because Martha knew her family couldn’t afford the surgery. But the determined mum refused to up.
“We went to different foundations, even to the vice president of the republic,” says Martha. “At first they offered to help us at one private hospital, but when the cost of the surgeries became apparent, they retracted and put us on the waiting list.”
After countless doctor’s visits, they finally got an appointment at Baca Ortiz Public Hospital in Quito where they were finally given the correct diagnosis: Mauro had Larsen syndrome. This congenital condition affects the development of bones throughout the body. While the signs and symptoms of Larsen syndrome varies, those affected are usually born with inward- and upward-turning feet and dislocations of the hips, knees, and elbows. Genetic testing confirmed the diagnosis.
Despite the seriousness of his condition, Mauro continued to develop as a lively, happy boy. Thanks to the therapy he received, he could speak quite clearly at three years old and even memorised and sung his favourite songs. But his mobility was very limited.
The turning point
When he turned four, Mauro was registered in the local Child Sponsorship Program where he received immediate attention. Since birth, Mauro has undergone five surgeries; two of these happened before Mauro was registered in the Child Sponsorship Program. Since then, three major surgeries to correct his hips were covered through Compassion’s medical fund.
The child development centre has supported Mauro’s family financially by paying for his other medical expenses, including transportation as they must travel the long distance to Quito several times a week for check-ups and physical therapy.
It has been three years since Mauro underwent the surgeries to correct his dislocated hips and the deformities in his feet. Since then he has gained mobility and independence. He can bathe and dress with his mother’s help. Mauro’s special enthusiasm for life allows him to enjoy a number of activities, including soccer, through the use of a walker. His parents are extremely happy and hopeful because of their son’s tremendous improvement and better quality of life.
“I like to draw and paint, to do crafts and play,” says Mauro. When asked his biggest dream, his big brown eyes burst with enthusiasm when he says, “When I’m big, I want to be a pastor.”
It’s a long road ahead for Mauro who needs further operations to reduce spinal scoliosis and the correction of his nasal septum, both characteristic of Larsen syndrome. Compassion will continue supporting Mauro and his parents through providing for his medical needs.
Wilson remembers several family members and friends reproached him because of Mauro’s condition and his lack of financial resources to help his son. They would say, “Okay, see if your God helps you.” However, the young father did not falter. “We’ve prayed that the people who haven’t seen God’s power will be able to see it,” says Wilson. “God provides the way because Mauro has started to walk.”
Martha sees the hand of the Almighty guiding them along the difficult path they have been walking. “I’ve felt God has used me. I’ve learned to love and persevere and to look for God. He will not leave me. His purpose for Mauro is great,” she says.
Words by Cecilia Yépez and Monique Wallace
Photos by Cecilia Yépez