Simplifying would help Avery and her mom

Michelle describes her daughter Avery’s first four years of life as being “filled with hospital visits, fear and uncertainty.” Avery has Coffin-Siris syndrome, a rare genetic disorder with about 200 reported cases worldwide. Coffin-Siris can affect many body systems, and often causes developmental delay in speech and motor skills. Avery attended CHEO consistently for outpatient appointments at 10 departments over many years. She had multiple surgeries and was fed through a g-tube until she was two-and-a-half. Michelle didn’t know what the future held for her daughter. Fortunately, Michelle can also call the beginning of Avery’s life a time of “progress and hope”— thanks to hundreds of OCTC therapy appointments, including occupational therapy, speech therapy, physical therapy and the clinic for augmented communication. Avery also attended OCTC’s preschool and school.  For years, Michelle drove Avery to therapy appointments throughout Ottawa, which helped Avery meet milestones that once seemed out of reach. Travelling between appointments makes it hard to fit in all the visits, and causes unneeded confusion for Avery. “It’s harder to explain where we’re going and why,” Michelle says. Being one of only 200 in the world has caused enough complications in Avery’s life; where she goes to seek treatment shouldn’t be another. The solution: A centralized location that makes it easier for Michelle to get Avery to the many medical and therapy appointments so vital in her development and to provide continuity for Avery’s care.