RICHMOND, Va. (WRIC) — Felix Johnson tenderly touches his daughter Juliana’s cheek.
“I know, I know, I know, I know. Is that better?” he lovingly soothes her.
This day will be time stamped in the family’s history books forever.
“We get to go home!” Felix chuckles. “So this is a happy day.”
Juliana has Emmanuel Syndrome, an extremely rare genetic condition where chromosomes 11 and 22 swapped information.
Felix says there are only 200 documented cases of Emmanuel Syndrome worldwide, and so many questions remain about it and the future of people with it.
Felix and wife Jamie only found out about baby Juliana’s struggles 35 weeks into what had been a by-the-books pregnancy after Jamie was rushed to the emergency room with a high fever.
“Just felt like a little hopeless in the beginning,” remembers Felix.
That reality hit them the day after Christmas. Juliana was then born almost a month later on January 25 at VCU Medical Center, where she has been ever since.
Juliana was diagnosed with a heart condition and a brain cyst causing hydrocephalus. A diaphragmatic hernia shifted all of her internal organs and put stress on her lungs.
“Pretty much started the mourning process because of the way that they were preparing us,” Felix describes the family’s reaction the earliest days of Juliana’s life. “The prognosis was so poor.”
Felix and Jamie juggled a home life in Ruther Glen with daughters Jaylin and Jacelyn, who are nine and five, while one of them was always bedside at VCU with Juliana.
Over the past six months, they have watched their little one beat every challenge with the support of the team at VCU’s Neonatal Intensive Care Unit (NICU).
“They’re like family now,” Felix says about the nurses who tended to Juliana around the clock. “They’ve helped us through some pretty difficult times. They’ve aways picked us up, given us hope.”
Now there are happy goodbyes for Juliana at the hospital. She will require home healthcare and heart surgery in the future, but she is well enough to finally go home with her family to begin a new life.
“It’s just so amazing to see what they’ve been able to do for her and her strength to keep fighting and her will to survive and overcoming every single obstacle that’s come her way,” says Felix with a smile.
A GoFundMe page has been set up for Juliana’s extensive medical care. Follow this link to make a donation to the family.