White Family Story 

I'm the mom of a seven-year-old little boy who has a rare genetic syndrome called Wiedemann-Steiner syndrome (WSS). He was diagnosed at four and a half. My husband and I were older parents who wanted to have a child and Austin arrived on the 15th of September and everything seemed very normal and within two months things seemed to change a lot for him.

So we entered CHEO and began our journey. For four and a half years we had no idea, we just knew he was different until we had the genetic testing that revealed that he had the WSS. Austin has multiple doctors, multiple therapists, multiple people to help him, multiple people to help me, multiple people to help our family in general.

In total it can be anywhere between 20 to 25 people on a whole. That's a lot to coordinate. My social worker originally suggested that we come to SCS and then they implemented a program to help coordinate things like a school meeting, things like coordinating surgery or home implementations with all the people that go with it.

So including teachers, your doctors, your social worker, your therapists, bringing everyone together to one table to have a full discussion about the child. And that made having someone else have all that contact, a huge improvement in our life. Nina helps to be able to keep it in one document, so that one person could pick up that document, and get a broad spectrum scope of who my son is, what his needs are, who's involved in all of that, and the scope that it is.

And that's what Nina and Service Coordination is able to help us to look at what are we missing in the bigger picture of what do you need to support as mom and dad, what does the child need to support through this experience or through this time and what are we going to need going forward that we don't always necessarily think of because we're just focused in that moment of the issue at hand. But there is a bigger picture that she helps to support long-term especially with the main care of school, hospital and the supports that are needed to be accessed to give the child what they need. 

I think the one thing I can suggest to families is there's no such thing as a silly question. Ask questions, ask questions constantly. Ask questions about your child, ask questions about you as parent, not understanding that there are supports available physically, emotionally, mentally, even financially. That someone who has access to the community can be able to pull from different areas of the community what might best serve not just the child but the family as a whole.