[Congressional Record Volume 170, Number 10 (Thursday, January 18, 2024)]
[Extensions of Remarks]
[Pages E56-E57]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                   HONORING THE LIFE OF CAROLINE WEST

                                 ______
                                 

                           HON. KATHY CASTOR

                               of florida

                    in the house of representatives

                       Thursday, January 18, 2024

  Ms. CASTOR of Florida. Mr. Speaker, I rise today with a heavy heart 
to extend my condolences to the family and the Tampa Bay community 
mourning the passing of Caroline West. Caroline passed away at the age 
of 26 due to complications of Alternating Hemiplegia of Childhood 
(AHC), a rare neurological disorder that she was born with. Despite 
experiencing the challenges from a rare generic condition, Caroline was 
a champion for improving health care for people with medical 
complexities and a beacon of inspiration to me and everyone whose paths 
she crossed.
  Born five weeks prematurely, Caroline suffered a seizure and stopped 
breathing in the first 12 hours of her life. Throughout her life, she 
underwent specialized speech, physical and cognitive therapy 
coordinated with the help of the Chronic-Complex Clinic at St. Joseph's 
Children's Hospital, a national leader in pediatric care. Although her 
battle with AHC was challenging and debilitating, Caroline was able to 
receive an education while creating lasting memories.
  Caroline was always vibrant and loving, and her joy centered around 
spending precious moments with her family and friends. From indulging 
in her favorite music by Miley Cyrus and Taylor Swift to getting 
pampered with nails and makeup, she embraced life with a fun-loving 
spirit. Despite her limited speech, Caroline communicated effortlessly 
through her expressive eyes, warm hugs and an innate ability to sense 
when someone needed comfort, making her a uniquely perceptive and 
uplifting presence in the lives of those around her.
  I am proud of Caroline's resilience and of her mother, Tish, for her 
unconditional love and willingness to fight for Caroline and every 
child with medically complex conditions. Caroline and Tish's invaluable 
work and advocacy inspired my work on the ACE Kids Act, which created a 
national medical home model for children with medical complexities. 
Tish and Caroline advocated for this bill in Washington and locally in 
Florida and in Congress, including Tish's testimony before the Energy 
and Commerce Committee. Because of their tireless advocacy, ACE Kids 
was signed into law

[[Page E57]]

in 2019, so now children with medical complex needs can access better 
and more coordinated care, which will improve health outcomes, lower 
costs, and make families lives easier.
  I have the deepest gratitude to Caroline and Tish for their 
sacrifices in helping address the unique challenges my neighbors with 
medically complex conditions face under the health care system to bring 
the best care. Caroline is survived by her parents, Tish and Bill West; 
her siblings, Billy, Drew, and Mallory; and many family members and 
friends who were all very dear to her. Additionally, I want to extend 
my gratitude to the medical team that helped Caroline and her family 
through this journey.
  Keri Eisenbeis, BayCare Health System's Chief of Staff and Chief 
Communications Officer, emphasized the West Family's dedication to 
advocacy, stating that ``the West Family, including Caroline, have been 
tireless champions for medically complex patients, including those at 
BayCare's St. Joseph's Children's Hospital.'' In addition to extending 
their condolences, they ``mourn Caroline's passing, but celebrate the 
legacy of advocacy she inspired which led to the passage of the ACE 
Kids Act.''
  Mr. Speaker, I want to express my sincere condolences to Caroline's 
family and friends. She will be remembered by her warm smile and 
contagious laugh. Caroline was taken from us too soon, but she leaves 
with us infinite life lessons and an immeasurable impact on those who 
knew and loved her.
  Rest in peace, Caroline.

                          ____________________