My nephew Carter was diagnosed with Spina Bifida at my sisters ultrasound and they made the tough decision to undergo in-utero surgery, pack up their lives and head down to C.H.O.P for 4 months. Faith was diagnosed with C.H.A.O.S. and her family made the similar trip down to Philadelphia to improve their daughter's quality of life.
C.H.A.O.S. is an acronym for Congenital High Airway Obstructive Syndrome - only 13 babies (or so) in the world have ever been born and lived with CHAOS. An obstruction completely blocks the child's airway, effecting her diaphragm and Faith is the only baby in the world to have her obstruction attached / near her vocal cords. At the age of seven she has had 35+ surgeries to open the airway and remove the obstruction. However, none have been successful thus far and she embarks on her next surgery this fall for another 4 month stint away from home.
Both families are amazingly strong, and I feel so blessed to know them both, especially both Carter and Faith. Two of the strongest, sweetest children I know.
Carter & Faith
What is more fun than water slides and pools - not much for these kiddo's!
Beautiful, just simply beautiful.
Good thing TB had some extra bathing suits for the girls to borrow!
Oh, how I love this face - even when he is being stubborn and won't smile for me!
Someone had a lot of fun on the water slide! Oops, he's a little to quick for me!
Sutton was just a bit exasperated by it all!
Please consider purchasing some of the below bracelets to help support Faith and her family.
If you are interested please contact me (dmeagher22@gmail.com) and I'll point you in the right direction.
(above photo courtesy of Melyca Waterman)
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