My name is Leah Traviss and I am honoured to be the Canadian Ambassador for the EI Cure Project. My youngest son Hayden, is affected with KRT10 EI.
The EI Cure Project is important to me because having EI isn’t easy and when you’re a new parent experiencing EI for the first time it can be scary. EI needs more attention from the medical world. The advice we received from our medical team was less than productive and I’m so thankful that I found support from other affected families. I need and want to be the voice for Canadian families affected by EI who feel alone. Our medical team here in Canada has only ever seen 4 patients affected by EI, so they cannot offer much support in the areas that we really need. If we had more resources and more opportunities to share what we have learned from experience I think the medical world would appreciate that and be able to learn from us.
I want my son to grow up having friends with similar needs and experiences so he doesn’t feel alone. The EI Cure Project is important because it connects people with EI, provides resources to help understand and manage the condition, and because we all want our children to have the chance of a cure one day. We know it will take time, but I am glad to be part of the effort in making a cure a reality.