Join Amber's Army

17 years ago, an amazing girl was born with ten perfect fingers and ten perfect toes. What doctors quickly discovered was that little Amber Sexton had a congenital heart defect that was missed on scans. The doctors quickly stepped in to support Amber and thus began her journey living with a chronic heart condition.

Over the years Amber has had to undergo tests, surgeries and many medication changes, with a lot of uncertainty about when her heart would no longer be strong enough to support her. Through the wonderful care of many experts, both in Arizona (where Amber was born) and PA (where Amber resides), Amber was able to grow into the beautiful young woman she is today.

Beginning this past summer, it became clear that the time had come for Amber to get a new heart. Since that time, she has fought bravely as her team at CHOP await a suitable match. Amber has had to fight many battles and twice have open heart surgery as doctors do whatever they can to keep her fragile heart going. Most recently Amber suffered a bleed in her brain due to necessary blood thinners which affected her speech and motor skills. Anyone who knows Amber realizes that she has always been a vocal advocate for her own care and her loss of speech was devastating to everyone.

Amber is working hard every day with speech, occupational and physical therapy to regain what she has lost and build her strength for additional surgery when a heart becomes available. This amazing girl continually goes above and beyond what is asked of her.


Family and friends have continually asked how they can support Amber and her family.  While Amber's medical needs are provided for, her family needs support to be able to continue to be available for Amber's care.  Both of Amber's parents have missed work and are about to run out of paid leave.  Amber's mother, Jennifer, spends weeks at a time at her bedside, coordinating with doctors and nurses about Amber's care.  We are blessed that Jennifer is a skilled nurse who is an exceptional advocate and caregiver.  Now's it's time for the rest of us to join Amber's Army and do what we can to support the Sextons.  Come fight with Amber and we can overcome any obstacles together!