At 18 months old, Jimai has been on 40+ antibiotics throughout her short life. She takes a minimum of six medications or multivitamins every day--more if she’s sick--and wears a smart vest two times a day to help break up the mucus in her lungs. This is her life with CF (cystic fibrosis), which she was diagnosed with within weeks after being born.
Jimai’s routine newborn screening showed that she needed further testing but it was likely that she had CF. When she was just 14 days old, a sweat test at Children’s Hospital confirmed it. “I had no idea what CF was. They told us not to google it, instead referring us to the Cystic Fibrosis Foundation,” Amber, Jimai’s mother, said. Neither she nor Jimai’s father, Josh, have cystic fibrosis, but both carry the Delta F508 mutation.
It took a year for us to process the diagnosis, Amber said, as CF is a world of its own. But Amber said her family, which also consists of Jimai’s two older brothers, is adapting well. “Jimai is just like our two boys, but she just needs some extra loving care. We work really hard to help keep her germ-free and keep her healthy.”
Having the support from the CF Foundation is so important, because most families are probably just as shocked as we are, Amber said. “What we’ve found is that everyone needs support; the more support, the better. We can learn things from each other and understand what we might run into with Jimai as she gets older and the reality of what she might be facing.”