Here is a video of a mild episode this past week. I don't have the heart to post the real bad ones.
And my wife's blog tracing our journey.
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.