Meet John, a joyful 3-year-old whose smile brightens every room. He loves swimming, spending time with family & his beloved dog, Hershey and sharing belly laughs with his favorite people. John’s curiosity and determination are seen in everything he does.
In June 2023, John was diagnosed with Fumarate Hydratase Deficiency (FH), an ultra-rare genetic disorder that affects energy production in the brain and nervous system. Caused by mutations in the FH gene, it can lead to developmental delays, seizures and other serious health challenges. Fewer than 100 cases have been reported worldwide. Despite the challenges, his family continues to embrace each moment with love and gratitude.
John and his mother, Paula, joined Citizen Care’s Life Sharing program for children with medically complex conditions (MCC). Paula shared this about choosing MCC Life Sharing:
“In April 2024, we began life sharing, which has been truly life-changing for our family. Having the ability to stay home with John, provide the care he needs, and ease the financial burden has been a blessing for which we are endlessly grateful. Through it all, our love as a family keeps us going—and we are so thankful for every single day together. “
Citizen Care Life Sharing program
Citizen Care Medically Complex Conditions Life Sharing program
