Season To Share: Lake Worth family struggles to pay for care that fuels teen's progress

Twin sisters Sakura and Akira Hernandez were born at 28 weeks, three months prematurely. They each weighed 1 pound, 11 ounces when nurses rushed them to the NICU.

“We could fit in Dad’s hands,” says Sakura, who is now 13 and loves dinosaurs. “Both of us together,” chimes in Akira, who has a passion for writing.

They were in the neonatal intensive care unit for two months before Akira came home. Sakura had an open-heart surgery at three weeks old and joined the family two months later.

While doctors warned their parents Charisma and Juan Carlos that premature babies tend to have learning delays and often need a couple years to catch up to other children, by their second birthday, Sakura still crawled even as her sister walked.

“Sakura was delayed and behind and we didn't know why," Charisma said.

Doctors eventually diagnosed Sakura with spastic diplegic cerebral palsy, a lifelong condition that causes muscle stiffness in the legs and affects fine and gross motor skills.

Family struggles to pay for care that fuels girl's progress

Since then, Sakura has attended weekly physical, occupational and speech therapy appointments. She also has undergone multiple surgeries, including a procedure in St. Louis where doctors moved bones in her spine to seek and remove unresponsive nerves.

Charisma left her job as a behavioral therapist to care for the girls full-time. She homeschools them, drives them to doctor appointments — three to six of them every week — and takes them to karate and horseback riding lessons.

At 11, Sakura got two more diagnoses: autism and attention-deficit disorder.

“That was a blow,” Charisma said. “I felt like I was failing her.”

Despite her disorders, Sakura has reached milestones doctors once thought impossible. She first defied the odds just by walking. She now rides an adaptive bike, jumps rope and swims. She earned a gold belt in karate and canters with horses.

One of the biggest challenges was improving her speech and social skills. Last year, Sakura attended three speech therapy sessions per week.

“I was afraid she wouldn’t be able to make friends or start a conversation,” Charisma said. But that fear never materialized.

“I like to visit my friends to play,” says Sakura followed by a burst of laughter. Gazing at her sister, Akira adds, “If you're going there, I'm going.”

Wheelchair brings relief, but minivan's age worries family

Over the years, the family has struggled to afford Sakura’s medical expenses. Insurance covers only so much of her multiple, weekly doctor appointments, in addition to her equipment and developmental therapy sessions.

“We have to choose what to pay for,” Charisma said. “There have been times when I could not take Sakura to therapy because we couldn't pay the copay.”

The family got relief last year when Sakura was selected as a buddy by Bella’s Angels. The Wellington-based non-profit has handled the co-payments not covered by insurance. It has sponsored her karate and horseback riding lessons.

In September, Bella’s Angels gave Sakura a life-changing gift: a motorized wheelchair. It was also her first wheelchair that didn't come to her second-hand.

No more having to wait for mom or sister to push her pediatric wheelchair — one that looked like a big stroller. Sakura can control the electric chair by herself with a black lever on her armrest. She can motor up to 4 mph. And she likes to go fast.

“I love it,” Sakura said between giggles. “I am still learning how to drive it in a crowd.”

The motorized wheelchair gave Sakura a sense of independence and autonomy, Charisma said. The twins can now stroll by themselves around the park, mall and zoo.

The 70-pound set of wheels, however, is injuring Charisma’s back and can barely fit in the family’s aging 2011 Honda Odyssey minivan. Some days, she loads and unloads it over six times.

“I want her to keep using this chair,” Charisma said. “I don't want my physical limits, of not being able to put the chair in the car, to then limit her.”

She said the family needs a portable wheelchair lift for Sakura so they can take the motorized wheelchair wherever she goes.

Travel for care takes family as far south as Miami

At least three days a week, Charisma packs up the girls, her 2-year-old son and the wheelchair in the van and heads to Fort Lauderdale, Miami and West Kendall to see Sakura’s specialists.

The family has tried to set money aside to buy a newer vehicle, but other medical expenses kept coming up.

“We don't know how we're going to do it,” Charisma said. “We are going to ride her until we can't anymore.”

Charisma says her biggest fear is that the minivan will one day give out and leave them stranded on the highway.

But the busy schedule and hard work is paying off. Sakura has become more comfortable in her own skin, Charisma said. She is thankful to have found support from the community as well.

“To see how she had progressed, I don’t fear her future,” Charisma said.

Sakura Hernandez's Wish

Thirteen-year-old Sakura Hernandez arrived in the world prematurely, had open heart surgery before she was a month old and has had to also contend with cerebral palsy that causes muscle stiffness and affects her motor skills. Up to six visits weekly to doctors and physical therapists and a new motorized wheelchair have given Sakura more freedom, and delivered skills physicians never expected her to master, including swimming and riding an adaptive bike. But family's finances are strained. They needs a newer minivan to help take 13-year-old Sakura to medical and therapy sessions at doctors' offices as far away as Miami. Her motorized wheelchair barely fits into the 2011 Honda Odyssey the family relies upon daily. The family would also welcome a portable wheelchair lift to load and unload the 70-pound wheelchair. The continuing costs of Sakura's care has made it difficult for the family to save for these items.

Nominated by: Bella's Angels

Valentina Palm is a reporter for The Palm Beach Post, part of the USA Today Network. Reach her by email at vpalm@pbpost.com.

This article originally appeared on Palm Beach Post: Season To Share: Lake Worth family struggles to pay for care that fuels teen's progress