Meet Alison: 2017 Speak Now for Kids Family Advocacy Day Hero
Alison’s life is an example of the transformative power of children’s hospitals. As a nine-year-old, Alison was diagnosed with a rare liver disease called Primary Sclerosing Cholangitis (PSC) and Crohn’s disease. She battled these two conditions for ten years before receiving a liver transplant at Yale New Haven Children’s Hospital (YNHCH).
Without YNHCH “I would not have gotten the care that I needed or access to the specialists that were needed to care for me,” says Alison.
Alison was pursuing a nursing degree at Sacred Heart University when she was blessed with a donor liver from a fellow classmate. After a long and difficult recovery, Alison graduated from school and began her selfless career as a nurse in the YNHCH Neonatal Intensive Care Unit. In this role, Alison has established a fund to help other pediatric transplant patients and their families with the services that insurance cannot cover, such as hotel stays and food. Her current position on the provider side of health care delivery has given Alison a unique perspective on the needs of children with serious chronic health care conditions. She has watched families struggle not only to pay for the medical care that their children need, but also to find the time and resources to care for their children outside of the clinic.
“[She] is a caring and compassionate person,” explains a representative from YNHCH. “Alison should be a good advocate for health care.”
On a personal level, Alison has benefited greatly from the Affordable Care Act (ACA). The ACA allowed her to stay on her parents’ insurance plan until she was able to start her own job. Alison is now worried about her status as an individual with a pre-existing condition and the financial burden of her annual deductible and co-pays. While these concerns will always be an issue for her, Alison has made it her life’s work to help other families in similar situations. Outside of the clinic, Alison is an Auntie to a beautiful little girl, and she enjoys spending time with her friends and family, hiking with her dog, and doing crafts.
Help us welcome Alison to Washington, D.C.!