The cheerful nurse assured five-year-old Isabella Rivera that the postage stamp-sized electrodes she placed on the young girl’s chest wouldn’t hurt.
“They’re just stickers,” she told Rivera, who took some convincing before laying back on the examination table and allowing the nurse to go about her task.
The visit to the cardiologist for a heart checkup has become routine for Rivera ever since being diagnosed as an infant with Turner Syndrome, a condition that affects only girls and usually entails a myriad of health issues.
In Rivera’s case, it has turned her family’s world upside down and left them in peril of not having a roof over their heads.
“I feel bad for the parents of all special needs parents because it is rough,” said Isabella’s mother, Nicole Rivera. “It’s just non-stop and it’s hard. We’re just trying to do what we can to make sure she receives the care she needs.”
Before Isabella was born, Nicole and her husband Ruben had full-time jobs and lived in a Coconut Creek apartment raising a son. Ruben does carpentry work while Nicole supplemented the family income with her job at a local charity, Food for the Poor.
But their lives changed after Isabella was born and soon became ill. It was determined that Isabella had Turner Syndrome, a condition in which which one of the X chromosomes is completely or partially missing. It is estimated that Turner’s occurs in about one in every 2,000 girls.
The result: Nicole resigned from her job in order to give constant care to Isabella and the resulting loss in household income left the family in dire financial straits.
“We just couldn’t do it on one income,” Nicole said. “With savings, we were able to (remain in their apartment) until our lease was over. We tried to see if we could do it on our own, but it just wasn’t happening.”
The Rivera’s eventually moved in with other family members. But that arrangement, with eight people crowded into one house, is no longer feasible. She said they are being forced to move and don’t have the funds to get a place of their own.
“I feel so pushed against the wall,” Nicole said. “It’s frustrating. We’re at a crossroads.”
The Rivera’s situation prompted the Danielle DeMarzo Foundation to nominate the family for Wish Book, the annual holiday season initiative by the Miami Herald and Nuevo Herald to help some of South Florida’s neediest families.
The Foundation was created after a daughter born to Frank and Jeannie DeMarzo was diagnosed with Turner Syndrome. That daughter, Danielle, was able to overcome her health issues and graduate medical school to become a doctor, according to the Foundation’s website.
Nicole Rivera is doing everything possible to help Isabella succeed as well.
But Isabella’s many health needs are both costly and time consuming.
“Once we found out she was sick, it changed everything,” Nicole said. “We were fully established and this took us through a whirlwind.”
Isabella has required speech and physical therapy. She also receives daily hormone growth injections to go with regular visits to a cardiologist and endocrinologist.
“Because she’s so tiny, there’s a lot of things we have to work on,” Nicole said. “There’s a lot of things that tie into it. She’s so young so we’re just taking it as we go. We have milestones, but they just come way later with her.”
For now, the Riveras are seeking financial assistance to help provide the family with housing.
“We can’t keep being stuck,” Nicole said. “I pulled myself out of everything — my job — and put all my energy into her, and she’s made progress. It could always be much worse, so we count our blessings.”