Name: Tristan
Age and Date of Diagnosis: currently 16 months old, diagnosed at 2 months old
Diagnosis: (Primary/Secondary) Griscelli syndrome and HLH
Location of Treatment: Diagnosed at McMaster Children's hospital in Hamilton, Ontario, Canada, Bone Marrow transplant done at Sick Kids hospital in Toronto, Ontario, Canada
Child’s Interests: crawling, giving kisses and high fives, cuddling stuffies
Tristan was born with an extremely rare immune disease called griselli syndrome. When he was about five weeks old he caught a little cold and had a runny nose, a few days later he ended up in the hospital with a fever and needed a blood transfusion. His first hospital stay was two weeks long and the doctors were not able to diagnose him. Shortly after he was discharged we were back at the hospital again, with another fever and needing more blood. A few weeks into his monitoring he was tested for Griscelli syndrome and we learned that he would need a bone marrow transplant. We were able to find a match on the cord blood registry and Tristan received his transplant in February of 2021. Today he is recovering well and achieving many of the normal milestones for a baby his age. We are so proud of our little warrior!
