The main goal of the Sydney Darragh Foundation is to raise awareness and funding for the Diamond Blackfan Anemia Foundation. We started this Non Profit Organization in the name of our daughter who has been living with and fighting this extremely rare form of Anemia since she was diagnosed at one month of age in 2008.
We Started this foundation after many years of thinking what can we do to help the Diamond Blackfan Anemia Foundation. Last year we decided to go through the process to set up a non profit organization and host our first golf fundraiser. We could not have been happier with the generosity from friends, family and strangers. Here is a little background:
In 2008 our daughter Sydney was diagnosed with Diamond Blackfan Anemia at one month of age. She has had at least one blood transfusion every month since then. We spend at least 2 days a month at the hospital having blood draws, and blood transfusions...and the occasional visits to the ER (She has a port so anytime she has a fever we are required to go to the ER, In 2013 we visited the ER over 15 times). Over the summer 0f 2015 Sydney will have Stem Cell Transplant. Her younger sister (and Hero) Hayden is a prefect match. Hayden will have to have a bone marrow aspiration to donate to her sister even though we saved her cord blood its normally not enough for this procedure. Sydney will have to go through a series of appointments and tests prior to the transplant and will also need to have a central line put in. She will then go through 8-10 days of chemo and will most likely lose her hair and become sterile. There are many risks with a procedure like this so it was not an easy decision to make but for her overall quality of life it is worth it. By no means is this a cure she will still have the genetic mutation of RPS19, and if she was able to have children she could pass it on. Hopefully some day we will have raised enough money to find a cure!!
