I am so excited to tell you about our foundation that I, along with family and friends started inspired by my son, Hunter. Hunter was born with a rare blood disorder called Diamond Blackfan Anemia. Diamond Blackfan Anemia (DBA) is a blood condition, present at birth, which is characterized by a failure of the bone marrow to produce red blood cells. Unlike other types of anemia, DBA is a bone marrow failure syndrome. It has also been linked to a genetic mutation in some individuals. There are only 600-700 cases in North American and 25-30 new cases per year. Hunter’s treatment requires blood transfusions every three weeks to live. He also requires a second treatment of nightly chelation to breakdown the extra iron stored up in his body as a result from all of his transfusions. Too much iron would become toxic and affect his heart, liver and other organs. To date, Hunter has received over 200 blood transfusions.
After realizing that rare disorders do not get a lot of attention or funds for research, we decided to do our part and bring awareness to our cause. We started Hunter’s Fight for a Cure Foundation of Alberta which was incorporated July 6th, 2007. Our mission is to raise funds for the Hematology Program and Child Life Program at the Stollery Children’s Hospital, DBA Canada, and to help raise awareness for the importance of blood donations.
The Hematology Program at the Stollery is a program for blood disorders that we are excited to be a part of. It consists of research and resources for helping families understand the disorder that is affecting their lives. It is very encouraging to be a part of a local program that may find a cure or a better treatment for not on my son, but for others who suffer from rare blood disorders. The Stollery is known for it excellence and we have seen that first hand.
The Child Life Program is a wonderful program that I, along with many parents, am grateful for. The play areas, the beach, toys, books and personnel that help distract kids while getting needles and other treatment all fall under this amazing program. All kids treated at the Stollery benefit from this program and it has made our life so much easier.
Diamond Blackfan Anemia Canada is a registered charity whose goal is to provide education, support and resources, as well as help fund research projects of DBA. We are grateful to have a group in Canada whose efforts are 100% dedicated to DBA and who have the same personal connection and need to cure DBA as us.
Blood donations are what keep my son alive while we wait for a cure to be found. People who donate blood do so selflessly so we spend time thanking them for donating and also encouraging new people to donate. When Canadian Blood Services say help save a life, we put a face to it.
The Foundation became a registered charity in 2008 and since then we have raised over $160,000.00.
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