Katie was diagnosed with Castleman disease almost 3 years ago. I had no idea then, that it would become such an important part of our lives. The connections we have made because of her diagnosis has expanded our family. Her fight should us a love and basis of support from so many we didn't even know we had. What once was a lonely, long, scary road of suffering for our family quickly became a road traveled by so many walking along side of us. We have been blessed to add so many people to our friends and family. Katie's bight light and infectious smile has warmed its way into so many hearts. We pray daily that her smile continues to touch so many and that her light never fades. With amazing people in her corner like Dr. David we feel a little more at peace.
The importance we have placed on being actively involved with her fight has allowed us to gain a great deal of knowledge on Castleman Disease. This sadly is still not the case with the rest of the world. Castleman disease is still unknown to many. When I say castleman disease it is usually followed by a confused look or questions about it. It still is scary to know that the disease our baby girl is fighting daily has a very unknown future. Now that we are in a good place with her doctors, chemotherapy schedule, maintenance routine of her disease, and continued connections within the castleman disease community, I want to continue to help spread awareness of her disease. I want to continue to educate anyone I can on what her disease looks like. I want to continue to do whatever I can to help in her fight. Here are some important facts about Castleman Disease. For more information on this disease and was you can help please go to www.cdcn.org
The impact the this organization had this past year was amazing:
Some important facts about castleman disease:
One of my favorite people on this earth, Dr. David Fajgenbaum. He is leading the charge to cure this disease not only for himself, but for our sweet Katie and so many others. He and his wife have become family to us, and along with them, an amazing team of volunteers working for the cdcn, and our mass group of supporters I know we can find a cure!! Follow this link to see a video of Dr. David speaking:
https://youtu.be/xpoulbi52N4
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