Meet Richie: 2018 Family Advocacy Day Champion
Richie is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Richie will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.
Richie was born with congenital fiber-type disproportion myopathy as a result of an RYR1 gene mutation, a rare condition that affects his muscle function. Because of his significant health care needs, he has received treatment at UH Rainbow Babies & Children's Hospital since birth.
Treated in the NICU immediately after he was born, Richie then spent two months in the pediatric ICU. He currently sees 11 pediatric specialists and occasionally requires hospital stays due to respiratory illness. But despite his complex condition, Richie is stable and healthy today!
“The care provided at a children’s hospital includes specialists who know that children aren’t just miniature adults,” his parents gratefully note. “Getting all Richie’s services in one place is very helpful to our family because of his mobility and health concerns; the connectivity among the doctors and sharing of information saves lots of time and reduces the opportunity for errors.”
While Richie’s condition can be limiting, his family is devoted to ensuring he can experience the fullest life possible. His parents happily explain, “Richie is observant and curious, and he has a fantastic memory; he is a great student and does very well in his first grade class. Richie began reading when he was two years old and loves reading books about Thomas the Tank Engine, his favorite character.”
Richie is also an expert electric wheelchair driver and even the star of a book — “Power Wheelchair Safety for Kids!” Richie’s adventures don’t stop at driving; he’s participated in Cub Scouts, wheelchair basketball, train rides, adaptive horseback riding and even adaptive kayaking.
Richie aspires to be a scientist and a superman astronaut when he grows up, and his parents are working to make sure none of his goals are beyond his reach. “Richie’s genetic condition makes him rare, but his precociousness, perseverance and joy make him unique,” his parents fondly point out.
Join us in welcoming Richie to 2018 Family Advocacy Day!