Jessica Edwards

My Great Strides Story

This year’s Great Strides Walk will be different for me and my family – for many years I’ve shared about joining this walk in honor of my sister, but this year it is also about honoring my mom, Letty Perez. My mom and I started on the planning committee for this walk this year together and I was excited to get back into it with her. As the planning started, she was already on a role - gathering sponsors and sharing her insight from her own experience with walks. She was a warrior and I want to share a little bit about her story and involvement with the Cystic Fibrosis Foundation.

My sister Kim was first diagnosed with cystic fibrosis at 9 months old, in around early 1987. CF was not something my mother had heard of before, but from that moment on my mom made it her mission to learn about it and fight alongside my sister. At that time the prognosis for kids with CF was not good but my parents remained hopeful. Over the years advances were made in the research of CF and the hope for more days for my sister and other kids with CF continued to grow.

 
My mom was a true champion for my sister and became involved in the CF community in many ways. She attended fundraisers for the CF Foundation to help raise money for research to continue to work towards finding a cure for CF. In the 90’s my mom began her journey with being a part of the Great Strides Walks. She led the planning of these walks with the help of my dad, family, friends, volunteers, and other CF parents. I remember vividly as a kid helping her do so. We sat at the city and got permits, made signs for the walks, cut oranges by hand for walkers, stuffed bags with items we had collected from sponsors and so much more. She truly dedicated herself to helping my sister and the CF community. As my sister entered high school, my mom found it harder to be involved with planning the walks due to my sister’s more frequent and longer hospital stays but we continued to stay involved in any way we could and still joined the walks and stayed on the committees.

Years later my sister passed at the age of 23, which is much longer than what my mom had been told at her initial diagnosis. We know this was due to the advances that had been made with CF research. After her passing my mom and family continued to walk in her honor and still fight for those with CF. She got back on the planning committees and continued her mission - she would never stop fighting.

My parents, family, friends and I walk each year in honor of my sister, calling ourselves “Kim’s Krew” but this year we will honor my mom and sister with “Kim’s & Letty's Krew”, and we hope you will join us. We appreciate the support we’ve received over the years and would love for you to continue to do so, either by walking along side us in October or donating to help us make CF one day stand for “CURE FOUND”.