Bravery at Any Age

I met a sweet little boy today while I was at work. One of my co-workers actually has a son with Chiari! She brought him up to my office today and I found out that he is such a wonderful kid. He's very young but was very compassionate. He had his decompression surgery three years ago and while he was in my office he showed me the pictures from the day he went in to have surgery. I let him know that I am not a candidate for the surgery. We talked for a while about his symptoms and how it made him feel and we recognized that we had quite a bit of similarities. His mother and I talked a little about treatment options and medication. Luckily, he doesn't have to take very much medication.

The surgery actually helped him to fix some of his damage. I talked to them about his age and that his cells can repair much more quickly than mine which makes me not a candidate for the shunt for the syringomyelia. The fact that my CSF flow isn't as constrained as with many chiari patients, I am not a decompression candidate. As he was leaving my office, he ducked his head back in and said, "I really hope you can get your surgery." I almost cried. What an angel!

He, and the other kids, suffering with this are why I want to become an advocate. I so wish I could afford to do that! I still feel very torn about the possibility of having a fundraiser. My medical bills are piling up very quickly and it's just so hard to get them all paid. When each time I have an MRI it costs me $800 and I have to do this twice per year, the bills add up. My very first MRI session was $1800 my part. It's just insane! That's only for the MRIs (overall my MRI's have cost me over $4,000 which I have to pay out). The emergency room visits, monthly, quarterly, semi-annual and annual doctor's visits add up with co-payments, testing and medications that cost money. It's about a $5,000+ a year disability in which I will never be rid of in the future. That is a scary thought for those of us afflicted.

I want to live my life more like Araja. He is a very positive and outgoing young man and I aspire to have his perky attitude for the remainder of my days. I want to be strong, not only for me and my family, but also for people like him that have to also live with what I do...and do so with great bravery.