It was a chance online search about Kearns-Sayre Syndrome (KSS) that led Rachel Godshall to her first ever trip to a UMDF Symposium, Mitochondrial Medicine 2019. Rachel’s sister, Crystal Neal, was searching the web for information about KSS when she came across a post about a fundraising event hosted by the McGovern family in New York. Crystal, who is also Rachel’s advocate, reached out to Dave and Loretta McGovern. Cavan, their 10 year old son, is also a KSS patient. The online connection became an opportunity for Crystal to talk about Rachel’s journey and for the McGovern’s to share their separate but similar story about Cavan’s journey. Crystal told Rachel about the conversation and soon, they were off to New York to meet the McGovern family and to attend a fundraising event for Cavan. For Rachel, 39, it would be her first exposure to similar patients and to the UMDF.
Rachel, who is from Bethlehem, PA, began her journey with KSS when she was 15. A routine eye exam revealed that she was suffering from ptosis, which is when the upper eyelid droops over the eye. Despite seeing a neurologist, it would take an additional eight years for Rachel to receive a diagnosis of KSS. Another 25 years would pass before Rachel would meet the McGovern family and the UMDF. Loretta McGovern shared with Rachel UMDF resources, including the upcoming Mitochondrial Medicine 2019. It was at the symposium where she learned important information that she is using in her life and in her treatment.
While the KSS keeps Rachel from being able to work, she stays active taking care of her husband, Samuel, and steps-sons. She looks forward to sharing good times with her parents, siblings, their spouses, and her 11 nieces and nephews. Rachel says she hopes she is able to attend Mitochondrial Medicine 2020 in Phoenix next year and every year after. “It was amazing to be part of a mito family and be understood and find hope.”
“My very first symposium was unforgett-able. My family and I were completely blown away.”