Elsa Dakilema waited in the fluorescently lit sterile hallway of the Riobamba clinic, sitting patiently in a row of chairs along with six other mothers. She has waited a long time, and finally, things are getting better.
She waited 30 minutes for her son Biron to get out of his speech therapy class, three hours on the bus to get him from their small community in rural Ecuador to the class in Riobamba, and three years for him to finally say his first word, which she said beaming with pride, was “mama.”
Biron was born with no roof in his mouth. This birth defect has made it very difficult for him to eat and drink throughout his life, and seriously stunted his linguistic development.
“I felt happy when he spoke and I saw that he was recovering. I felt like anything was possible, I asked god for him to recover and he is with the help of the foundation (MEDLIFE), thank god.”
Elsa first realized something was wrong with Biron right after he was born, when he wasn’t able to breast feed normally. She tried feeding him powdered milk, an expensive thing to buy for a poor farming family, but still the milk would come out of his nose. She was never able to afford to take him to a doctor, or to figure out how to navigate Ecuador’s confusing public healthcare system on her own, but she eventually figured out how to feed him as an infant by plugging his nose and pouring powdered milk into his mouth.
As he got older, when he would try and eat solid food, it would get stuck in his nose. At close to age 3 he still was not able to properly pronounce any word.
“I have many hopes for him, but sometimes because of money it isn’t a possibility. I want him to be able to speak well and be normal with other kids,” said Elsa, as she sat on a bench near a fountain in a plaza in Riobamba after speech therapy.
A vendor passed by selling espumilla, a typical street food in Riobamba made from fruit and cream, think eating straight merengue out of an ice cream cone. Elsa asks Biron is he wants one, he smiles and nods, this is how he communicates with his mother, nods and gestures.
“He doesn’t have any friends,” said Elsa, wiping Biron’s face, hopelessly trying to contain the mess he is making eating the espumilla. “It makes me sad, there are kids who make fun of him when he can’t express himself. What happens to a mother? When the kids make fun of him, when they mimic him, it is sad for me. What happens to him? It lowers his self-esteem. He feels shame. He feels like he is incompetent.”
When Elsa visited the MEDLIFE mobile clinic in Pagse, the small agrarian community she lives in, it was the first time Biron had seen a doctor. Since then Biron has had two surgeries and taken one month of speech therapy, 30 minutes twice per week.
MEDLIFE walked Elsa and Biron through the entire process, organizing and accompanying them to doctor’s appointments, helping them get the operations covered by public health care, paying for aftercare, stitches and medicine, as well as making reminder calls for speech therapy and meeting Elsa there each time to check in and follow up.
During the long commute home, Elsa will dream about a better future for Biron. She hopes he will be able to speak normally, have friends, and study in primary school – though she doesn’t know where she is going to get the money for supplies.
All of the effort put into helping Biron is beginning to yield results, he is able to say some words, he can eat fairly normally now, but he still needs to have one more surgery to fully construct the roof of his mouth so that he can speak normally.
MEDLIFE is taking him to Quito, the largest city in Ecuador, to see a specialist and get that last surgery. After another surgery and continued speech therapy, the doctors believe he will finally be able to speak like a normal child.
