August 2022 AMCer

Carley is a one-year-old girl with arthrogryposis as well as a sub-glottal stenosis, which causes breathing difficulties.  She is trach and vent dependent, fed through a g-tube, and has low muscle tone.  She is the daughter of Eric and Ashley Sullivan in Indiana (born in Ohio).  She has two older brothers, Caleb and Conner.  Carley continues to grow bigger and stronger and enjoys her family, especially her crazy brothers!

Eric and Ashley are the parents of Carley Sullivan.  In 2020, in the midst of Covid (while working at a hospital and finding out Ashley’s hospital shut down it’s birthing center and she could no longer use her doctor or her hospital) she went to a brand new doctor for the gender ultrasound and discovered something was amiss.  She was scheduled for a follow up at a maternal fetal medicine specialist.  After having two healthy boys with no complications or interventions, this was all new territory.  After a very traumatic ultrasound in which she was told some pretty scary possibilities and the term arthrogryposis was mentioned.  It was suspected, but they could never confirm anything.  After forced genetic testing revealed nothing as well, it was 20 weeks of continuous monitoring and no answers.  

On June 6, 2021 baby Carley was born.  After an urgent C section, Carley wasn’t making any noise and wasn’t breathing well on her own.  She was sent to the local children’s hospital.  After 5 months in NICU it was finally discovered that she had a narrowing in her upper airway, in addition to the arthrogryposis.  This resulted in a tracheotomy/trach placement.  She is currently breathing through her trach with low vent support but getting the trach was what allowed her to come home and meet her brothers! 

Carley is now a year old and while she still has muscle weakness and requires physical and respiratory support, she is a very stable and healthy girl!  She has had multiple surgeries to “fix” her joint contractures from the arthrogryposis as well as placing the trach and g-tube to sustain her little life until she can breathe and swallow all on her own.  Carley is growing and thriving and loves being home with her family and petting the family dog. 

The hardest part about having a complex medical needs child is finding and utilizing the resources around you.  The world is not friendly to those that need aid.  We have tried tirelessly to get home nursing for Carley, forcing us to move from Ohio back to our hometown in Indiana after losing an entire income and becoming a single income family due to the lack of available home nursing to help care for Carley.  We are still fighting that battle now in Indiana to find the support she needs to allow us the time needed to support our family.  Getting the necessary equipment to support Carley’s growth and weaknesses has also been extremely difficult.  We have spent months trying to obtain items needed for her to sit supported and bathe easier.   She is growing fast and it takes months to years to get equipment approved, if ever! 
Carley is so blessed to be a part of this community with arthrogryposis because we have found so much love, support, and encouragement from these families!  Early on during pregnancy, Carley’s mom found the arthrogryposis Moms group and started following AMC Princess Ana and other AMCers online.  This gave us the strength to raise Carley and face the challenges each and every day.  As she grows we find so many resources and great advice from the Moms and individuals that have walked this road before us.  It is simply a blessing to have found this community even if it was a physical disability that brought us all together! 

It takes a village to raise a typical child, it takes an army to raise a child with medical complexities! Find your people, hold them close, and fight the good fight, because these kids will continuously exceed expectations.  “Different” life is still good life!   – Ashley Sullivan