With the help of some lovely friends, we started this page to keep people in the loop with how Dexter and our family are doing. Our world was turned upside down at the end of April when we received test results back and Dexter was officially diagnosed with Mucopolysaccharidoses Type 1, also known as Hurler Syndrome. Dexter has been through much already in his short life. This syndrome has impacted his hearing, feeding, physical and cognitive development, his eyesight, spleen, spine, ribs, hips, breathing and possibly his heart. We have yet to go for a heart ultrasound but are hoping that we will find out soon. The treatment for Hurler's is weekly intravenous enzyme replacement therapy and then a bone marrow transplant to replace the missing enzyme and stop further damage in his body. Dexter is currently having weekly enzyme replacement therapy at Children's Hospital in Winnipeg. He may need to continue having enzyme replacement temporarily after the transplant or for the rest of his life. Time will tell.
We are only doing in person visiting with our small circle of family right now due to Dexter going to the hospital weekly for enzyme therapy via IV. If you would to like personally reach out to us via text or email, that is totally okay!