Apopka couple get answers on daughters’ rare condition
For Antonio Rivera and Maria Cruz, the most difficult thing about raising their two “princesses” has been the fear of facing the unknown.
“My daughters were born perfect, but within a few months, we began to notice that something was not right,” said Cruz, 42. “That’s when we started to visit the doctors, and nobody knew what they had. They always thought it was some kind of autism, and they confused it with many other conditions.”
The family moved from Puerto Rico to Apopka over a decade ago in search of better treatments to help their daughters. It wasn’t until a year ago that the couple finally discovered the actual condition their two daughters have.
Zorielis, 18, and Alexandra Rivera, 15, were born with an anomaly in the composition of their DNA. A genetic mutation on chromosome 16 causes a condition so rare that only six cases have been reported, including Zorielis and Alexandra.
When Zorielis was just 8 months old, her mom noticed she wasn’t sitting or doing anything “that a baby her age should do.”
“When she turned 1 year old, everything started going backward. I had no insurance, no help in Puerto Rico, so we moved here,” Cruz said.
The couple say having to find ways to address their daughters’ needs without knowing what exactly affected them has been an uphill journey.
“We were giving everything in our power, taking care of them while we worked and hearing such denial was unbearable,” added Cruz as she held her daughter Zorielis, who, with her help, was almost standing upright.
Although they can’t walk on their own, with the family’s and therapists’ assistance the girls are able to stand using walkers and other special equipment. The daughters are not able to talk.
Cruz said she and her husband both have a mutated gene on chromosome 16. Their daughters “got my mutated gene and my husband’s mutated gene, and that’s why both developed the unnamed MRPS34 [Mitochondrial Ribosomal Protein S34],” she said.
“I don’t deny it, when I learned everything [about the mutation] and when we had the second child with the same condition, I felt frustration, anger, feelings of which I am not proud today. But I learned that every day is a gift and that we have to live the present because if not, we miss the best moments,” Cruz said.
The parents turned to the Center for Conductive Education almost nine years ago for help.
The Winter Park center focuses on developing motor skills so its clients can reach their highest level of independence through physical and cognitive activities.
For the Rivera Cruz family, the moment they arrived at the center, they saw their daughters’ potential.
“They come out tired due to the effort they make here. But that’s what we wanted. If their potential was only 80 percent, we wanted to make sure they reached that percentage and not limit them to 50 percent,” Antonio Rivera said.
Founded in 2001, the nonprofit offers special kindergarten through 12th-grade classes. It also has a summer camp that families from all over the world attend.
“It is incredible how the work and results of our method have spread around,” founder Vicky Raymond said.
The holistic educational approach mostly assists children with cerebral palsy, but it works for others with motor disabilities, like Zorielis and Alexandra.