First I will say this feels uncomfortable. The whole idea of Faith’s Folly was to keep friends & family updated on the events that started in early March 2012.

Faith who started out as a very happy and healthy girl with Downs Syndrome suddenly developed respiratory failure whose cause eluded us and the experts. This is a chronicle of our struggle and successes.

The link to the site started spreading via Facebook and others and now I’ve been asked to provide a way for friends of friends or family to be able to donate as a means of helping.

We have planned ever since the birth of our son who was very medically fragile that we would always make our choices so that we had the best medical insurance we could get. Now with two medically fragile children we are in about the best position ever as far as medical expenses are concerned. That said, 17 years ago when our son went through his medical odyssey we had really great insurance. We ended up filing for bankruptcy for everything NOT COVERED BY INSURANCE. Take a moment and think about all the changes to life that has nothing to do with insurance. Here is a short list:

• Commute to and from NYC from Sussex County NJ
  • $25 gas
  • $9.50 George Washington Bridge Toll
  • $15 Parking at CHONY (Not even a $5000/day ICU bed gets you free parking)
• Food in the city. We do our best to get at least one or two meals a day from home.
• Mom is now on FMLA (Family Medical Leave Act). NJ offers 6 weeks paid & 6 weeks unpaid. Even at the maximum benefit it’s about 35% of her regular earnings.
  • Some have asked to Mom & Dad both need to be there. Well that’s a personal decision for all to make. For us it is not an option to leave an 8-year-old disabled child alone for any part of the day. As important WE are PARENTS, WE make decisions together for the care of our child and face the good and bad together. Dad has been permanently disabled since 2007, Mom is a school nurse responsible for the care of other people’s children during the school day. Do you really want someone who is over-tired, over-stressed and frankly whose attention is elsewhere making critical decisions for other people’s children. The simple answer is no and she has the professional responsibility to recuse herself when she is unable to perform those duties.
• It’s about $100 a day when everything goes right.

Thanks for taking the time to read, if you can donate, Thank You from the bottom of our hearts. If you cannot, Thank you from the bottom of our hearts for taking the time to follow our little girls folly.

Joe & Sue