Penny
Age 7, New York
Meet Penny. Penny loves being around her friends and loved ones, especially when she can be outside. She’s a true nature girl and could gaze at the trees, flowers, and the vibrant colors of her surroundings all day. Take her to her favorite koi pond and she’s in bliss!
Penny has Aicardi Syndrome, a congenital neurological disorder that severely impacted her physical and cognitive abilities. She needs a wheelchair to get around and a G-tube to eat, and often gets respiratory illnesses including pneumonia which require her to use oxygen. Penny also has seizures, which need to be monitored constantly.
The ACA and Medicaid helps Penny get the therapies and equipment that not only help her live, but make her comfortable, keep her out of pain, and give her the quality of life every child deserves.
Penny's dad, Josh, says this about her current care: "Three years ago, we had a series of conversations among ourselves and with Penny’s doctors and decided that considering how traumatic, painful, and precarious Penny’s life had become at home, it would be the best choice for us and her if she moved into an excellent children’s facility nearby. I can’t imagine I’ll ever do anything harder in my life. But it turned out to be a Godsend. We see our Penny all the time, and she is so well taken care of. She has nursing care 24 hours, as well as a staff of technicians and nursing assistants who care for all of her activities of daily life, from dressing her in the morning to bathing her and putting her to bed at night. The place is beautiful, with recreational areas, kids wearing their actual clothes instead of gowns, toys, decorations, a wonderful playground. She’s so happy there and as healthy as can be possible. Maybe .0000001% of people could actually afford this facility on their own. Penny is on institutional Medicaid, as most of the children there are. That means everything is paid for, and her facility is given enough money from Medicaid to make the facility one that medically fragile children need and deserve. "
Penny's dad also says this about the way being a special needs father can bring out the best in some dads: "I have come to know some of the most spectacular special needs dads that I could ever meet. I’ve known dads to build entire rooms to accommodate their kids, convert a van themselves, carry a 60-pound daughter miles through the hilly woods because she loves it, change jobs and move the family cross country for better services for their children, and create enough adaptable devices (and Halloween costumes!) to earn an engineering degree."
Read more about Josh's reflections on being a special needs father in his Little Lobbyist blog post and listen to his interview on the podcast for and by caregivers "Who Lives Like This?"
Submitted by Josh Fyman, Penny’s dad