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'Keep pushing forward': Utah family battles medical challenges with optimism

CLEARFIELD — Life started out like a movie for Omar and Rebecca Hernandez, who met through AOL instant messaging.

“You know the movie ‘You’ve Got Mail’? That was literally us. I worked for AOL and we had emailed back and forth and he popped up on chat, almost exactly like in the movie,” Rebecca Hernandez said in an interview with the Deseret News.

Since then, the couple has married and added eight children to their family, whose tale has gone from a romantic comedy to an inspiring drama. The Clearfield family faces an inexplicable load of medical challenges with optimism and hope.

Three of the Hernandezes' eight children — Audri, 15; Ezra 14; and Natalie, 4 — have been diagnosed with Type 1 diabetes, a disease they share with their mother, Rebecca.

Their daughter Stacia, 11, was diagnosed with synovial cell sarcoma cancer in her left foot just over a year ago. Last August, her foot was amputated after six rounds of chemotherapy.

All of the children, including Liya, 13; Gwen, 10; and Ivy, 8, were born prematurely.

But 2-year-old Jocelyn Hernandez is their miracle baby.

“When I was pregnant with her, we saw that there was something wrong on the ultrasound when we went to find out the gender at 15 weeks," Rebecca Hernandez said.

Doctors recommended that she terminate the pregnancy.

"They said that there were so many things wrong, it would be a miracle if she even survived,” Hernandez recalled. “Her organs were on the outside of her body and her spine was deformed. Her kidneys were enlarged and her growth was restricted because of a problem with the umbilical cord. …

"We decided to carry on and let whatever happen, happen,” she said.

When Jocelyn was three days old, exploratory surgery revealed that she had been born with a rare form of an already rare disease known as OEIS complex.

The older children, well-versed in Jocelyn's story, chimed in with details, reminding their mother not to forget some of the specifics.

“She came home and we were told to just wait and see,” Rebecca Hernandez said. They learned that Jocelyn’s challenges included bilateral hip dysplasia, spina bifida and a tethered spinal cord that led to a stroke when she was four months old.

Though Jocelyn will still face five or six major surgeries and a two-month stay at Johns Hopkins Hospital, her family balances a life of physical therapy appointments, insulin shots and MRIs with grace and smiles.

“Everything just happened so fast that we really didn't have a choice, we just got into the groove," Rebecca Hernandez said while her three youngest daughters wrestled for a spot on her lap. "Audri’s had diabetes for almost 10 years now, so she helps out with her brother and sister. We have to joke around. We always say, ‘If we didn’t have bad luck, we’d have no luck at all!’”

Stacia, who is still waiting to be fit with a proper prosthetic leg, can be found jumping rope on one foot at school, and even attempted ice skating this winter.

She teases her siblings as they chase each other around the house. She moves so confidently that her missing leg is barely noticeable.

“I try to stay positive because I know that being sad never helps anything. I know that Heavenly Father is watching over me,” Stacia said. “I know he has a plan for us and he gave us all these difficult things because he knew we could handle it, so I handle it.”

The Hernandez family has been touched by kindness from friends, the community, perfect strangers and doTERRA, which “subbed for Santa” this year and helps provide the Hernandez family with plane tickets to and from Maryland for Jocelyn’s surgeries.

Despite the challenges, the Hernandezes work around their limitations and live as normal a life as possible.

“I know this is something temporary and it doesn’t determine the type of people we’ll become or what we’re going to accomplish in our lives,” Rebecca Hernandez said.

Amidst their three or four doctor’s appointments each week, they frequent the aquarium and the movie theater as a family and hope to return to the local pool this summer, depending on Jocelyn’s surgery schedule.

“If I had listened to the doctors, Jocelyn wouldn't even be here. She's taught me that when they say 'We don't know what to do,' find someone that does know what to do,” Rebecca Hernandez said. “Don't give up. Keep pushing forward.”

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