Our 5 yr old son, Cole, came into this world with an opinion about everything. From politics to fashion, he's not afraid to share his opinions with anyone willing, or unwilling to listen.
Cole is fiercely independent, funny, smart and tough both physically and mentally. Now, Cole's toughness, and ours, will be tested in the most challenging battle any of us has ever faced.
In the Fall of 2011, Cole was diagnosed with a very rare blood disease called HLH (Hemophagacytic Lympho Histiocytosis). The disease prevents his blood from regulating in the fight against infection. Without the ability to regulate, his blood seeks other things to attack, including his liver, spleen and other internal organs. Ultimately, it kills its host unless treated. Our little 5 year old host who once wore a Batman costume for 6 months straight.
This is a story of our long journey with our son's rare disease. A disease with minimal information, virtually no funding and a staggering mortality rate. In many ways, it may have been easier to deal with a known disease, where the odds are more predictable, support groups exist, friends understand the situation, research is abundant and the treatment plan is well documented.
It's an incredibly complex disease to diagnose and treat. So far, the physical journey has led us from our home in Connecticut all the way to Cincinnati, OH. But I expect the emotional journey will be much longer and infinitely more difficult.
We are blessed to have such a strong network of friends, family and co-workers providing support and love as we face this fight. As we enter this journey, I'm saddened by the unjustness of those families without the support or financial means to offer their children a fair fight. This blog is an appreciation of your support, acknowledgement of your love, an attempt to keep everyone informed and a dose of distractive therapy in our journey.