Meet Maddy: 2018 Family Advocacy Day Champion
Maddy is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Maddy will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Maddy is a beautiful 4-year-old with a radiant smile and a limitless sense of humor. She has already exhibited a lifetime’s worth of determination and energy, and she shows no sign of slowing down soon. Her next adventure is to join us in Washington to advocate on behalf of herself, her brother and kids around the country.
Like her big brother, Alex, Maddy has been diagnosed with mitochondrial disease; she also struggles with immune deficiency and disaccharide deficiency. Mitochondrial disease is a serious condition without a cure — it requires lifelong medication and therapy.
Maddy’s mother, Alison, explains, “mitochondrial disease, no matter to what degree, robs children of a normal life.” Despite these extraordinary challenges, Maddy has learned to thrive.
Maddy’s medical home is Cook Children’s Medical Center. She has needed extensive intervention from Cook since an early age, and Alison credits the hospital with having the unique capabilities to care for her young daughter.
At the hospital, Maddy has bonded with Dr. Beam, who has diligently and compassionately cared for her for years. While Maddy is on medication and receives therapy, she is doing extremely well overall and leads a normal life.
The care Maddy receives at Cook Children’s is exceptional for many reasons beyond her treatments themselves; Cook Children’s ensures that the hospital is always a welcoming place for Maddy. She feels at home at the hospital, thanks in part to the hospital’s facility dog, Ralph, and his handler, Kizzy.
“Maddy loved Kizzy and Ralphie. From the time she was an infant, Maddy has had a special relationship with them. She loves spending time with them. They give her a reason to look forward to going to the hospital,” recalls Alison.
Maddy is a happy and determined young girl who loves to dance, sing, read and swim. She enjoys going to school and playing with her brother, Alex.
Join us in welcoming Maddy to 2018 Family Advocacy Day!