Bella
Bella Brave. I’ve been calling my baby girl Brave ever since she was 3 days old and endured her first of 23 surgeries. Being born with SCID (Severe combined immunodeficiency), Hirschsprungs and Cartilage Hair Hypoplasia have led to Bella needing: a bone marrow transplant, 23 surgeries and over 800 nights in hospital. She’s only 7y old and has recently been listed for a bowel transplant due to bowel failure and loss of vascular access.
Through this journey we have needed to stay in hospital in 3 different provinces and through all our travels for Bella’s medical needs, the Ronald McDonald House Charities Canada has supported us the entire way.
My hope is that soon our province of Saskatchewan will begin Newborn SCID screening.
If this was in place when Bella was born it would have saved us a whole year in hospital. I am so thankful for all the immune deficiency support groups & transplant support groups online. They have been a saving grace in many worrisome situations I’ve needed relief from during the small windows of time I have been able to be at home with Bella vs admitted in hospital.
Due to Bella’s complex medical journey that continues I have been unable to continue my career as a full time teacher but am so happy to have finally started a merch website for my daughter.