Cady is a sweet and smart 6 year old girl. She was born with a very rare genetic disorder called KCNQ2 that causes severe eposodic rigidity and dystonia when she spikes a fever or when viral or bacterial infections trigger her immune system to respond. The onset of these episodes varies in severity, from mild dystonia to full on stiffness and muscle excitability -- she is fully consicous and experiences severe unimagenable pain through her episodes. She lands in the hospital to treat the pain, release the muscles with benzo treatments and flush her kidneys to prevent dangerous and potentially deadly spikes in CK - which are toxins released to the body when muscles overexert.  In a recent attack, she was tachecardic for 2 days, her heart so overloaded that her dystolic pressure lowered to a deadly 40.

Here is a video of a mild episode this past week.  I don't have the heart to post the real bad ones.
https://youtu.be/mbbwNKlinyc

And my wife's blog tracing our journey.
https://cadencecourageous.blogspot.com

Little is known about this disorder. She is a sample size of one in the documented and observed medical world which means treatments are expensive, there is no financial support network through charitable funding or medical research. My wife and I of modest means absord all the costs of her treatment, which runs nearly $20,000 per year. We are able to handle a good portion of this through budgetary discipline, but not all.



We never ask for help, but we are now given that her condition has recently sparked potentially fatal symptoms on a monthly basis.  We are asking for our network of friends and family to contribute what you can - even if it is nothing. If we don't raise a single dollar, we will consider this a success if just the mere idea is achieved of building awareness for rare disorders and the struggles that families like us encounter day in and day out.