A Message From Our Founder: Amy Spring

After my 6-year-old had numerous medications fail her for seizure treatment over the course of a year, she was referred to a Neurosurgeon at the Alberta Children’s Hospital. It was suggested that the next best treatment would be brain surgery. We had tremendous support from the neurology team, but that is where the supports ended. It is hard to find others that are willing to talk about their experiences, and even harder to know where to begin searching.  

A year after the first surgery, my daughter was still having uncontrolled seizures. With even more medications failing her, this is when the second surgery was presented to us as an option. This is when I started looking for resources and supports, and found the number of holes and gaps in our system. Doctors and nurses do their best to pass along information needed to each patient and their families. Every patient is unique, and their needs are different. Each family may have different abilities to take care of their child, or have language barriers, cultural differences, the list goes on.

In 2020, my daughter’s surgeon and I were talking. He had mentioned how he would love to see his “epilepsy” surgery families find a way to connect and support each other. He asked if I had the time to take on this venture and I accepted. I have spent much time connecting with other families since then and found that the need for support is much greater than expected, and goes much further than just epilepsy families. The entire neurosurgery community is a very strong and empowering community, and we need to come together. 

After many conversations with my daughter’s surgeon and creating fundraisers to support and bring awareness to neurosurgery, I decided to develop the Calgary Pediatric Neurosurgery Association (CPNA). This will be a place for us to all come together, to be there for one another. Our kiddos, their siblings and parents/caregivers will have a  place that can offer supports such a rehabilitation and counselling. I believe that this is a way to fill the gaps in our system and create connections.