Hope for Sophia & Cainin

Hello, my name is Kylee. I have two amazing kids who were born with Congenital Dyserythropoietic Anemia. Their names are Sophia and Cainin. They are 6 and 7 years old.

CDA means their blood destroys itself rapidly, leading to the need for life saving treatment every month. Since the time they were born, they have received blood transfusions every 4 weeks. In almost eight years we have had about 165 blood transfusions now, with no stop in sight. Unfortunately due to the frequency, the kids also have iron overloads that cause organ damage and severe pain. For a year and a half we have done extensive chelation therapy, which means the kids must have subcutaneous infusions lasting ten hours every single night. This has been exceptionally hard on them.

Our hearts are even more broken as we recently discovered the chelation therapy is not working as hoped. We have been referred to a cardiologist due to their hearts being so damaged. The cardiologist let us know cardiac arrest could happen at any time, which must be closely monitored. The medications they must take causes blindness, hearing loss, and organ failure. We take consistent trips to Riley, Peyton Manning, and Cincinnati Children's to maintain these vital organs, and to receive MRI's to see the damage being done. Due to lack of blood, this also causes delays in the children's education. They receive frequent therapies to help them cognitively and physically.

We have recently decided with their hematologist that there is no other route left except curative treatment. Our current plan is a splenectomy, with chemo, radiation, and a complete bone marrow transplant for both children. We are in desperate need of help with travel costs and extra medical expenses. After eight years of fighting, we were hoping for a better end to their battle. We never wanted to have to ask for help, but things have gotten very serious and we want to give our kids the best we can in this last leap of their fight with CDA.

We truly appreciate any help, prayers, and advocacy. CDA is a rare blood disorder that causes devastation to the few families it does effect. Thank you for being a part of our battle and reading our story.

The Woodson Family