Meet Paisley: 2022 Family Advocacy Day Champion
Paisley is participating in Speak Now for Kids Family Advocacy Day - June 12-14, 2022. Through this event, Paisley and her family will discuss her health journey, Le Bonheur Children’s Hospital’s role in providing her with necessary health care services, and why the public and our elected officials must invest in the future of patients like Paisley.
Following the 20-week anatomy scan, doctors were concerned about signs of abnormalities with Paisley. After Paisley was born with a cleft pallet, she remained in the NICU where she was diagnosed with dwarfism and Schwartz-Jampel syndrome, a rare condition characterized by permanent muscle stiffness and bone abnormalities.
“There was mostly a fear of the unknown, due to the rarity of her condition,” says Stacy, Paisley’s mother. “There have been less than 100 cases ever reported.”
Paisley has faced reoccurring respiratory illnesses for several years, often for days or weeks at a time. She was on oxygen for three years, currently uses a CPAP machine for sleep and still receives ongoing treatments for breathing and oxygen saturation. Paisley’s care, other than her orthodontic care, is covered by Medicaid.
“Thankfully Le Bonheur has been able to provide care for her complex needs in one place,” says Stacy.
The COVID-19 pandemic and social distancing is difficult for the family. “Paisley had been treated for chronic lung disease in the past, so the family was home-bound for months at a time, out of caution,” Stacy added.
Currently, Paisley is doing well and loves anything creative. She’s getting bigger, better and stronger and she required no inpatient treatment since before the pandemic.