Sharing her Story

Shakespeare once wrote "Though she be but little, she is fierce" and these words have never held more truth for our Katie.  

She is such a beautiful, vibrant, amazing, 3 year old girl and even through her battle so far with Castleman's, she has remained fierce.  One of the goals I have had since she was diagnosed was getting answers and sharing her story.  Being diagnosed with a rare disease that does not have many answers on what her life will be like in 5, 10, 15+ years  is very difficult.  With that being said we have done a great deal of research, reaching out to other Castleman's patients, and sharing Katie's story with anyone who would listen.  In the past few weeks, this has really benefited our family.  We have been invited to attend a Castleman's Disease summit in California in December to learn more about this disease as well as share Katie's story.  We have been asked to be apart of the planning committee for reaching out to other affected patients and families, as well as becoming a Castleman's warrior.  We also just recently received an email from the lead doctor in the Castleman's Disease Collaborative Network asking if we would be willing to be their feature story for Novembers medical Journal newsletter.  It has been very hard to see the blessings that were coming from the trials over the past 2 years with Katie, but I believe that God is giving us this trial so that we can share it with the world and maybe help someone else who has a child that gets diagnosed very early and has no where to turn.