This article first appeared in the Miami Herald in collaboration with the Lee Caplin School of Journalism and Media.
For Natacha Sinvil, the well-being of 6-year-old Leo Alcindor is her reason to wake up each day. Life in Haiti has not offered the best conditions for Leo’s quality of life, so on Dec. 10, 2023, she made the decision to change his life.
“At just six months old, he suffered a stroke and began experiencing seizures with an unknown cause. This left him immobile,” said Sinvil, 51, who is Leo’s aunt and legal guardian.
Leo’s mother faced postpartum depression after having his younger sister, Lea, making it hard for her to take care of him. With no contact from Leo’s father, who is still in Haiti, the court gave full custody to Sinvil, saying her home was best for his growth.
Feeling heartbroken and helpless, hoping to give Leo a better life, Sinvil brought him to Florida. He left behind his 1-year-old sister, with hopes of reuniting someday, and now he lives with his aunt in Lauderhill.
Leo attends Bright Horizon School in Pompano Beach, an elementary school dedicated to children with special needs. It offers him an environment to grow and learn.
“[He] came all the way from Haiti hoping for a better life and healthcare,” said Sinvil. Leo has some serious challenges. He has epilepsy and is nonverbal.
THE HIGH COST OF HEALTH CARE
“I met Leo when he [was] referred to me as my new client,” said Johyko Joseph, his case manager at Epilepsy Alliance Florida, which provides services to over 500,000 people living with the condition.
“His sweet little face made me immediately fall in love. I felt an immediate bond with him and his family.”
The cost of Leo’s care has overwhelmed the family.
“His initial care was expensive, and his first ER visit alone was $800 for X-rays and evaluations,” Sinvil said. “But I was to make sure Leo would receive the proper care he deserved.”
His care required regular hydrotherapy sessions that were not easy to access.
“At 5 years old, he weighed just 16 pounds,” Sinvil said. “I traveled regularly from Broward to West Palm Beach to get him 30 minutes of physical therapy.”
Even when they managed to travel for therapy, it was not always successful.
“Some days, traffic would prevent us from making it in time, forcing us to turn around without even being seen,” Sinvil said.
When Leo arrived in Florida, there was no wheelchair for him, so Sinvil had to improvise by carrying him around in a car seat. He later received a wheelchair from the Center for Independent Living of Broward, a nonprofit organization that has helped more than 100,000 people with disabilities in Florida. However, the vehicle and house are not equipped for a wheelchair, limiting Leo’s mobility.
Joseph nominated Leo to receive help from the Miami Herald/el Nuevo Herald Wish Book program. Each year, the program highlights community members in need and invites readers to donate.
Their wish is to add a wheelchair ramp or lift to their Toyota SUV for easier transportation and install wheelchair-accessible ramps at all home entrances. “Having ramps and accessible entrances would be life-changing to us,” Sinvil said.
While things have not gone exactly as she hoped, Sinvil feels grateful for every small step in the progress they have made. Her focus now is on making sure Leo can live as comfortably as possible.
“We still may not have received the miracle we envisioned, but we are grateful for the opportunity to help him live a fulfilling life,” Sinvil said.
