When Jenifer arrived home from China with her newly adopted 19-month old daughter, she felt a mix of emotions. Amid the joy of cuddling her new child in her arms and relief at having completed the journey, she felt reasonably confident about being able to meet the needs Maddie would have with a diagnosis of club foot. It was a shock when four years later she learned that difficulties Maddie was experiencing were due to polio contracted prior to the adoption. Her expectations for her family’s future were changed.
Jenifer struggled to navigate the complex maze of health resources to get Maddie the care she needed from specialists in numerous medical disciplines. “Although we have seen some brilliant and compassionate health care providers, the way our health care system is structured, there is seldom anyone who can help us integrate the complex and sometimes conflicting information we receive. As a result, I have had to become a medical case manager of sorts, a role I find both stressful and unbelievably time-consuming, especially when I really just want to focus on being a mom.”
Today Maddie uses a wheelchair and wears braces on her legs. Finding a way to incorporate fitness and other benefits of athletic activity into her daily routine was a challenge. Jenifer approached Raising Special Kids for assistance. “They helped me find a wonderful pediatric physical therapist who is consulting with Maddie’s school to help integrate her into physical education classes with her peers,” she said. “In addition, they referred us to a wonderful athletic organization called Arizona Disabled Sports, which has allowed Maddie to participate in competitive archery, track, field, and swimming.”
Maddie’s 11-year old brother, who was born with a treatable but rare metabolic condition, loves baseball. Jenifer is now learning to navigate the demands of an active sports life of two siblings.