Amanda DowneyMy name is Amanda Downey and I live in Fort McMurray, Alberta, Canada. I am a PRISMS Regional Representative for Canada. My husband and I have been members of PRISMS since we received our daughter’s diagnosis four years ago. I am a freelance graphic designer and my husband, Brian, works in the oil industry. We have three children, two boys 14 and 12 and a daughter, 10. Our daughter, Finleigh, was diagnosed with Smith-Magenis Syndrome when she was six years old. She loves taking things apart, her iPad, and all things pink and purple. You can read more about me in my long neglected blog, http://onedayatatime-am.blogspot.ca.
Debbie BrooksMy name is Debbie Brooks. I am a teacher and a mother of two girls. My younger daughter was diagnosed with SMS in 2016, just before her fourteenth birthday. As soon as I received her daughter’s diagnosis, I read everything I could find about SMS. I found the PRISMS website to be a great source of information. My family, daughter’s grandparents and daughter’s school teacher were fortunate to able to attend a PRISMS conference a few months after we receiving my daughter’s diagnosis. I loved meeting other individuals with SMS and their families, and I didn’t feel alone anymore.
As a teacher, I am familiar with IEPs and the IPRC process. Although my daughter was not diagnosed until she was almost 14, I have been dealing with SMS for many years has experience with a wide variety of community resources. I look forward to sharing what I have learned through my own experiences with a special needs child in Canada and meeting new families.
Brandi WilsonMy name is Brandi Wilson, I’m mom to three, Sid (11), Lilli (10, with SMS) and Jack (9). I am married to my high school sweetheart, we’ve been together since 1999. Sid drives transport, so he is not home Monday through Friday, and I am an Early Childhood Educator. Life with Lilli is challenging, especially when my husband gone. My two sons step up and help as much as they can, they are wonderful advocates for their sister. Despite the frustration they sometimes feel towards situations they understand that it’s not their sister that does those things, it is SMS.
We Live in Sault Ste Marie, Ontario, and I am a Regional Representative for Canada. I’ve been a member of PRISMS since Lilli was diagnosed in April of 2009. Getting her diagnosis was like an ah-ha moment, everything finally made sense. She was born with heart defects, had surgery to correct them at five days old, she missed all her milestones, and had failure to thrive, but we blamed her heart surgery and recovery. She is now a busy, LOUD, lovable girl who will be in grade 5 in a mainstream class with a 1:1 educational assistant.
Theresa & Mark SmythWe are Mark and Theresa Smyth and we live in Ottawa, Canada. We have three wonderful children, Thomas is 12, Julianna 10 and Daniel is 8. Mark has worked in the financial sector at RBC Dominion Securities Inc. a brokerage firm for 20 years since graduating from the University of Western Ontario. Theresa has been a Registered Nurse (RN) for 18 years at the Ottawa Hospital on a surgical floor. Our family leads a busy and active life with swimming lessons and baseball in the summer and skiing in the winter.
Our beautiful son Thomas was diagnosed in 2019 with Smith-Magenis Syndrome at the age of 11. We would like to assist newly diagnosed families with support and information. Raising a child with SMS is full of beautiful moments and is very rewarding, although we know it can be challenging as a parent. We would like to use our experience and resources to help and encourage other parents. We want parents to know that they are not alone and they can access help through PRISMS.
