Hi, we’re Dani and Ivars. Parents to Riley and Charlie. Riley is becoming a big kid/tween. Charlie is now our angel and our saint.
Riley is the bestest big sister we’ve ever seen. Making sure to always make time for her little brother.
Despite some developmental delays Charlie was the happiest almost two year old.
On March 29th 2023, Charlie was admitted to McMaster Children’s Hospital because of respiratory difficulties. He was immediately intubated and taken to the PICU. Doctors and specialists would spend the next two weeks trying to figure out the cause of his sudden breathing limitations and a fever without an infection. Eventually Charlie wouldn’t wake up, causing more confusion. On April 5th, two months before his 2nd birthday, the Metabolics and Neuromuscular specialists ordered an MRI finding that Charlie had an extensive amount of lesions on his brain stem. The brain stem is what controls your lungs, your speech, your swallowing, your eye movement and more. Charlie never came home. He became an angel and a saint on April 10th.
On June 13th, our family received Charlie’s official diagnosis of Leigh’s Disease. Leigh’s Disease is a rare and fatal genetic mitochondrial disease. There is no cure for Leigh’s Disease.
So many people love Charlie and the family and we were overwhelmed by the outpouring of support. Our dance studio (Not Just Another Dance Studio) created a GoFund me to help cover costs to accommodate Charlie if he could have come home and then to help support our family on our grief journey after. While in the hospital Dani found writing updates on the GoFundMe and Facebook to be the easiest way to communicate with those offering support rather than trying to answer each message.
It has since turned into a therapeutic blog for her and an opportunity for the world around us to learn about Charlie and get to know him. It is helping others understand the family grief.
What this site becomes beyond that is yet to be determined. Charlie will not be forgotten and the family hopes to be able to educate the world on the rare disease that took Charlie from us.
