Josephine wants to be close to the action: loud noises, lots of people, beautiful music. And as a 4-year-old, she loves being held. Lucky for her, she has 14 older siblings who supply her with plenty of noise, action, and snuggles. Although she is the youngest, she runs the show in her household, partly due to her sweet and smiley personality, and partly due to her special needs.
When she was born, Josie was diagnosed with schizencephaly, an extremely rare birth defect in which abnormal gaps, or clefts, form in the hemispheres of the brain. This can result in developmental delays, cognitive impairment, paralysis, seizures, and more; the symptoms depend on the size and location of the clefts.
Josie was born missing about 50% of her brain matter, which resulted in a seizure disorder, cerebral palsy, and blindness. She needs full-time care, as she cannot move independently, and she uses a G-tube for nutrition. Her weekly schedule includes a rotating cast of nurses, aides, and therapists. But her medical needs do not change the way her parents, Christopher and Jaime, see her. “Josie is perfect,” says Jaime. “She’s been defying all the odds that the doctors gave her at birth.”
Christopher and Jaime adopted all their children, and know their family is different because they chose a life full of medical needs. “A lot of families don’t choose this life, it chooses them,” says Jaime. The decision to adopt Josie was scary because they knew their life would change, with lots of doctor appointments and a lifelong commitment. “But that transition to loving Josie and caring for Josie led to our whole family being able to transition into adopting several more siblings with more significant medical conditions.” They adopted five more siblings after welcoming Josie into the family.
Christopher and Jaime want other families struggling through a birth- or in-utero diagnosis to know that life continues. “Life changes, but it still goes on, there’s still a lot of quality of life for your child to have and for your family to have,” says Jaime.
Josie’s family connected with A Kid Again through a nursing agency last summer. They have been on several Adventures, including Kings Island, the farm tour, a Colts game, the water park, and the birthday bash. One of the favorites for this family of 17 was the holiday party at Conner Prairie, where each child was able to take home a gift. “One thing I really appreciate with A Kid Again is that it loves on the entire family, not just the child with the disability,” says Jaime. Although going to the hospital is not fun for the child who is sick, they sometimes come home with new toys and attention, which can leave other kids feeling left out. “I like that A Kid Again includes the entire family for an amazing experience,” says Jaime. “All the kids are treated equally there, and the kids know we get to go because of Josie. They get a day of fun with their siblings.”