Our sweet Kalliopi! We are fundraising for DDX3X Syndrome for the Foundation to work towards finding medical solutions to help children with her rare genetic disorder, gearing up towards Global Rare Disease Day (Feb 28th). We are a fun-loving family of 4 in Victoria, BC, Canada (on the unceded territories of the lək̓ʷəŋən peoples, including the Songhees and Esquimalt Nations).

Our story: Kalliopi was the happiest baby since birth. At 9 months old, we had a sudden realization that not only was she developmentally delayed, but that she wasn't able to feel pain. We were lucky to be in Cyprus and receive such swift and excellent care from a great team at the Makarios III Children's Hospital, which allowed us to quickly discover her diagnosis with a rare genetic disorder DDX3X Syndrome at 13 months old. We have been lucky to have our friends and family support us along the way as we navigate supporting Kalliopi to meet her needs.

The DDX3X Foundation is funding gene therapy research in the USA to work towards hopefully finding therapy for these sweet kids to help improve their outcomes. Nico and Kelsey hope to hold more fun fundraisers in the future, but for now if you consider making a donation to the DDX3X Foundation on Kalliopi's behalf, we sincerely appreciate the support!

Love,
The Christofi Family (Nico, Kelsey, Ari, and Kalliopi)