Ask me what is Amyloidosis ?
My sister Shari and I just lost our father to a really rare disease most people haven't heard about. It's called amyloidosis, it causes abnormal protein called amyloid to build up in your tissues and organs. It has no cure. This is a disease some people working in the medical field don't even know about. If our dad could have received an earlier diagnosis he might still be with us. Our dad was only 62 when he died. Up until he got his diagnosis he was a healthy person who was living a happy life. He did everything right and was the epitome of kindness. It was life changing for our family to understand why this happened to him. It took months of seeing several different doctors to even put together a treatment plan. The hope was that the treatment would give him more time as we knew there was no cure. He had primary AL amyloidosis and it was affecting mainly his heart. He was doing chemotherapy and his numbers of abnormal protein were going down quickly. It was working! But his heart function was getting worse. It was a constant battle of trying to find the right balance. It was trial and error and learning curves. Doctors wanted to study him, they wanted to learn. It was a scary thing having people not knowing what to do. Unfortunately even though his numbers were almost at 0 and he was reaching the possibility of a stem cell transplant, he died suddenly before he got the chance. We want to help raise money and donate it to causes that will spread awareness and help with the research needed to know more about it. These donations will also help to educate medical personnel about this devastating disease. We have set a goal this summer to run three Spartan obstacle races earning a trifecta medal for completing three in one season. This adds up to approximately 35-40 kilometres of running and 75+ physically demanding obstacles. At these races we plan to wear t shirts and start informing others of this disease. In the future we hope to host our own 5k walk/run dedicated to our dad where we can raise money that way too. The money that is donated will be going to The Canadian Amyloidosis Support Network. Any contributions would be greatly appreciated. Our dad fought this disease for nearly a year and was so positive throughout. He wasn't angry because he saw young children getting chemo and he said he couldn't be mad when he saw that. We want his bravery and courage to mean something. We want other people to have the chance to fight this. Early detection is so important! Thanks so much in advance. Please follow us on our journey at: