This story was originally published in the Miami Herald in partnership with the Lee Caplin School of Journalism & Media.
When Dina Lowe discovered she was pregnant with her third child in April 2010, she ran every test possible and prepared for a healthy baby. Dina and her husband, firefighter Chris Lowe, had raised two children, one of them on the autism spectrum, so they thought they knew what would come next.
Then, Riley was born.
“You never expect to have this situation,” said Dina, 55, who lives with her family in Davie. “And when you do, you just want your child to be happy. God…that’s all you could pray for, right?”
The situation she refers to is the cascade of medical complications that began immediately after Riley was born. Within two days, doctors diagnosed her with CHARGE syndrome, a rare and severe genetic condition that affects the heart, nerves, eyes and ears. Parents often do not know of the condition until the baby is born.
She struggled to breathe and could not feed on her own. Riley, who is now 15, had her first surgery to install a feeding tube at 18 days old, which she still uses. By the time she came home at four months, she had undergone eight procedures at Joe DiMaggio Children’s Hospital in Hollywood.
But for newborns with CHARGE syndrome, surgeries and long hospital stays are needed to survive. Riley suffered in the hospital, especially with her heart. The hole in her heart caused blood to flow into her lungs.
“She had a hole the size of a quarter in her heart,” said Dina. “Once the cardiac team at DiMaggio was able to give her surgery, she was a whole new baby” and she was on the road to a recovery that would allow her to come home.
Today, Riley is deaf, visually impaired and non-verbal. There is no cure for CHARGE syndrome; however, Riley has beaten nearly all the odds. Because of her vision and balance issues, along with low muscle tone and frail stature, Riley has struggled to walk independently, but has been learning with a walker for the past few years. She also has a cochlear BAHA system, a headpiece worn like a headband that sends vibrations to the bone and is used to treat hearing loss.
Dina says navigating insurance has been one of the hardest parts of caring for Riley. The cochlear was challenging to get approved, her adaptive shoes were not covered and the family is still awaiting approval for a bath chair.
“It can be challenging with insurance companies and what they’ll cover,” Dina said. “Initially, it’s always going to be a denial. And then you gotta kind of fight for it and reapply.”
Before Riley was born, Dina taught history for 11 years in Broward County Public Schools, including Charles W. Flanagan High. But with all the care her daughter needed and other responsibilities, she had to leave. Now the family relies mainly on Chris’ salary, but Dina helps make ends meet by delivering for DoorDash.
Riley is in ninth grade and attends special education classes at Western High School in Davie with the support of a nurse because she is kindergarten-level. She loves swimming, going on car rides, spending time outside, and being with her friends. Every evening, Chris and Dina take Riley for walks in her stroller.
“Dina is very routine,” says Chris, 53, who works for the Davie Fire Rescue Department. “They come home, usually Riley has a peanut butter and jelly sandwich, she might play with the iPad or dolls in her room, and then it’s dinner and a walk.”
From Wish Book, the family would like an adaptive tricycle so Riley could enjoy the outdoors independently. Dina explains that she’s too big for a jog stroller and would not be supported enough on a regular tricycle.
“It would help her core and leg strength, sitting up would help her scoliosis,” said Dina. “My hope would be that she would try to pedal by herself and get away from me, like how little kids on trikes try to pedal away from their parents.”
Riley was nominated for Wish Book by Jeannie DeMarzo after they met at the Joe DiMaggio Children’s Hospital Special Needs Fair in September. DeMarzo is the president of the Danielle DeMarzo Foundation, which supports individuals with special needs by providing resources, programs and awareness.
“They came up to our booth, and I met Riley, and she is really a happy kid,” says DeMarzo. “I just looked at the family and I see the love. You can tell when people are really committed to their children.”
“Sometimes, I feel like I’m just drawn to somebody, and I feel like God says to me, ‘That’s the person’,” she adds about nominating Riley. “I just want to bless them. They could really use a holiday wish.”
“I would just love for her to have this tricycle,” Dina says. “Oh my gosh, could you imagine being able to be on a bike next to her one day? How awesome would that be?”
