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.
Effective immediately we are just interacting with our immediate household. Please feel free to message us directly if you feel inclined to do so! Being isolated from other people including our own family will be hard so hearing from others will be encouraging! Some people have told us they don't feel comfortable donating on our Go Fund Me and that is completely okay. If you prefer to etransfer, please free to send it to [email protected]. If you prefer to send a cheque, please contact us and we can send you our mailing address!