Help Dylan raise money

My daughter Dylan (6 years old) has Diamond Blackfan Anemia (DBA). DBA is a life-threatening illness caused by bone marrow failure, primarily of the red blood cells, for which there is currently no cure. DBA is an extremely rare genetic disease with an estimated 2-3 new cases diagnosed in Canada per year with currently less than 100 known cases in Canada. For this reason, there is very little funding provided by the Government for research, with most of the funding coming from friends, family, and corporations that have some connection to a member of the DBA community. Most DBA patients are diagnosed within the first year of life. Currently there are only 3 treatment options available to these patients, including ongoing transfusions, steroid treatment, and bone marrow transplant, all of which come with side-effects and risks.Dylan was diagnosed at 6 months old with an extremely low hemoglobin of 33 (normal 110-140) during a routine doctor’s visit. It was at this time that she was immediately admitted to the hospital and had her first blood transfusion. From 6 months to 1 year of age Dylan endured 12 more blood transfusions, 2 bone marrow aspirations, multiple tests, and multiple stays and visits to both Sick Kids Hospital and Peterborough Regional Hospital. In her short 3 years she has had 4 EKGs, multiple X-rays, multiple IVs, and so many needles and finger pokes that we cannot even begin to count. Dylan is currently on steroid therapy to manage and stimulate red blood cell production, which comes with many short and long term risk factors. Without any known reason, steroid therapy can stop working in which case she would have to go back to transfusions every 2-3 weeks. Ongoing blood transfusions come with their own risks as well, such as iron overload which can cause death if not managed correctly. We do not even want to consider a bone marrow transplant due to the extremely high risks associated with it, ones that we are not willing to take at this time. It is for this reason we need to learn more about DBA through funding research and finding new treatment options with the goal of one day finding a cure.