My CHEO Story
My eldest daughter is diagnosed with High Functioning Autism Spectrum Disorder. There is no provincial support as of yet. As a result we have changed to a private school out of necessity. We’ve seen genetics, and the blood lab. Our son was diagnosed with hyrdronephrosis, vesicouretral reflux, Ureteropelvic Junction Obstruction that resulted in surgery at 11 months of age, multiple ER visits for Urinary Track Infections, and for breathing issues. Lastly, our youngest daughter was diagnosed with Arthrogryposis Multiplex Congenita before birth that affected all four extremities and ewas placed in ICU at birth. She’s also had appointments with neurology, genetics, cardiology (small VSD at birth). She’s also seen Orthopaedics at CHEO and Shriners, she also had 5 months of clubbed foot casting, tenotomy, capsular release of the elbow and triceps lengthening. OCTC- rehabilitation since 3 weeks, has attended OCTC preschool. I also take part in the Family Advisory Council at CHEO.
Why I'm involved
I am involved as a CHEO- RI Family Leader for some personal fulfillment and to help use my lived experience to contribute to improve for future patients.
- Presented her Family Story to the Patient and Family Advisory Committee in April 2019
- Provided feedback on Healthy Active Living and Obesity Research (HALO) study