This card is going to a very special family with a very heartwarming situation. Easton was born 8/23/12 with a rare disease known as Epidermolysis Bullosa (EB). In this condition, there is a defect in the connective tissue of the skin and mucous membranes that causes the skin to be so fragile that the slightest friction, minor injury, heat, rubbing, or scratching causes severe blistering —inside (such as the mouth, stomach, esophagus) and outside the body. These blisters can cause serious, sometimes fatal problems, when they become infected. The systemic and repetitive nature of the blistering leads to blindness, swallowing and breathing difficulties, scarring, infection, disfigurement, disability and dehydration. Ultimately, such devastating effects can produce a high rate of mortality. In fact, 87% of babies born with one of the more severe forms of EB do not live more than 12 months. There is NO cure for this horrific disease. Sufferers of EB have compared the sores with third-degree burns. They live in unthinkable pain.
With skin as fragile as butterfly wings, EB patients are dubbed “Butterfly Children." On the outside, physical wounds and limitations brought on by this disorder prevent them from normal daily activities enjoyed by other children. On the inside, their dreams are the same as any child who loves, plays, learns and grows despite the pain and impediment caused by their disease.
Easton's parents are with him in Cincinnati while their other 3 boys are still back in Syracuse, NY. As a parent, I can't imagine how hard it is for them to be so far away from their children. I am hoping this card gives them a little moment of peace. You can read more about Baby Easton's story here on Facebook: https://www.facebook.com/SupportBaby...17708921611213
Or you can make a donation here: http://igg.me/p/212935?a=1117035
and a BIG Thanks to Cindy (Mothermark) for bringing this story to Teapot Tuesday!
stamps- PTI Everyday Blessings
paper- PTI white
Ink- versafine black, various alcohol inks
Date: Tuesday, October 23, 2012 GMT Views: 1064
Registered: March 24, 2006 Location: Deep in the Heart of TEXAS Posts: 16128
Tue, Oct 23, 2012 @ 12:29 PM
Denise, a gorgeous butterfly and lovely sentiment for baby Easton!
------------------------------ Phyllis Young at heart, slightly older in other parts. We really never grow up, we just learn how to act in public!! What if you woke up today with only what you had thanked God for yesterday??
Registered: March 15, 2012 Location: Alabama Posts: 11086
Tue, Oct 23, 2012 @ 12:48 PM
Your card is so beautiful! Your butterfly is amazing and your sentiment is thoughtful, caring and sweet! Thank you for letting us know about baby Easton and explaining the specifics. We tend to forget the gravity of their situation. I hope all the cards will give them a smile and the knowledge there are so many people who care!
Registered: October 21, 2010 Location: in the okanagan in b.c. canada Posts: 10536
Tue, Oct 23, 2012 @ 4:47 PM
So, so beautiful. so thoughtful of you to add the extra warmth and story. The butterfly so fragile and pretty liek the little ones that get that disease...its so sad. That sentiment is sooo perfect, it will def. help the family through this totally hard situation. Ty for your sharing and love..:0).
------------------------------ We as people are raindrops of colorful ink , falling down Crisp and Clear, each a different shade more vibrant then the last, but once we realize at the bottom of an endless abyss we all fall into the same inkpot forming one color, only then can we come together as one My son.