Hi my name is Noah Swanson. I am an energetic, happy-go-lucky two year old boy. The doctors have diagnosed me with an extremely rare bone marrow disorder/blood cancer called Myelodyspastic Syndrome (MDS), also known as Pre-Leukemia. I will need a life-saving bone marrow transplant this spring. But, we are still looking for a donor match, since my family members are not a match.
While I wait for my transplant, I bike, hike, go to the zoo and camp out in our RV. My best buddies are my two dogs Scout and Fred, and my sister Sydney. Sydney is in kindergarten. I love her so much, and I want to do everything that she does. Sydney likes reading and learning new things and so do I. I can not wait to go to preschool in September, when I turn three!
My Medical History
When I was six months old, I got my first ear infection. This continued for months and I often would run a very high fever. Mom and Dad say I was extremely brave as I rarely complained, even though; it was really painful. After many trips to the pediatrician, an ENT Doctor prescribed tubes for my ears. Mom and Dad thought I would finally be relieved from the constant infections.
While on vacation at Disneyland in California with my family, July of 2010, I started running a high fever again. My parents saw me having convulsions and were terribly frightened for me. At the emergency room, they told my parents I was having a febrile seizure, and that is when the doctors diagnosed me with neutropenia. Neutropenia means my white blood count is very low and I have a hard time fighting infections.
Anytime I get a fever, I have to have my blood counts evaluated to see what my levels are. If my levels are low, my doctors will admit me to the hospital until they are acceptable.
After one and a half years of anxiety and uncertainty for my parents, I was diagnosed with MDS on November 4, 2011. The doctors say I have the bone marrow of a 50 year old man and my bone marrow will continue to degenerate. My best chance of curative therapy is a bone marrow transplant. I have to get the transplant soon, or I may develop an acute Leukemia (AML) or fatal bacterial infection.
Mom and Dad have great medical care for me, but, even with insurance and the best case scenario; they are faced with at least $50,000 in out of pocket expenses. I don’t want them to worry!
How Can You Help?
My friends and family have partnered with Children’s Organ Transplant Association (COTA) to help raise money for transplant-related expenses. COTA is a national charity dedicated to organizing and guiding communities in raising funds for transplant patients like me. They have also provided my volunteer team with training, materials, and support; all free of charge. Best of all, 100% of the money raised is used only for transplant related costs! Big hugs go out to my friends at COTA for providing my family hope, and emotional support! You can check them out at www.COTA.org.
There are a lot of ways you can help. Please consider making a donation to COTA in honor of Noah Swanson, attending a fundraising event or reaching out to my volunteer team for, or with suggestions. With your support and generosity, I can look forward to a future full of camping trips, cuddling with my dogs and hanging out with my family.