Nicole Phillips’ (Haylee’s Aunt): When I Grow Up…
Standing in the Cardiac Intensive Care Unit, I listened closely to the words “there is just not enough research.” I was standing there in disbelief and in heartache. When you are given a life expectancy of ten years at the age of three, it means you will never drive a car, go to prom, graduate, fall in love. Doesn’t everyone deserve the dream of “When I grow up…”
Standing there I knew that I would not accept these words, this prognosis, and this life for my niece Haylee. Immediately I began to research what I could do to help. That is when I found the Pulmonary Hypertension Association and Team O2 Breathe. A few months prior I had completed my first marathon just 6 months after Haylee’s diagnosis. I ran for those who can’t, for Haylee. I knew that this was how I could make a difference.
I joined Team O2 Breathe as a PHAthlete with a #Heart2CurePH. This began my journey. In October of 2016, I began the campaign Run4Hay to raise awareness and research dollars for the Robyn J. Barst Pediatric Research and Mentoring Fund and PHA. For 6 months, I trained, running on a treadmill and spending countless hours in a gym. During long runs when I would hit “the wall,” I would watch Chloe Temtchine’s video for “Breathe” and continue to put one foot in front of the other with tears streaming my face knowing in my heart that the reason to continue was to PHight for these children who are PHighting for every breath. Run4Hay was my commitment to Haylee, to all pediatric patients with PH and to the PH community. As the months went on and I began to connect with more and more inspiring PH patients, caregivers, PH families and friends. My heart became full. The miles became easier and my PHight became stronger. There also have been times of sorrow as I have already begun to lose PHriends to their PHight. On April 9, 2017, I began my 26.2 mile run. My heart was racing just as at rest a PH patient’s heart runs at a marathon pace. As I ran through the marker at mile 26, Chloe Temtchine’s “Breathe” came on and I saw Haylee at the finish line with the most amazing excitement. Her arms were wide open waiting for me. WOW! At this moment I knew my purpose. It was more than the pride that I felt when we hit our goal of $1,000 raised and then went on to end the campaign with $5,098. It was more than the passion of building relationships with the PH community. It was my why.
Run4Hay began my journey, but it is not over. This is a lifelong commitment for me and I will never give up the PHight for awareness, research dollars and a CURE. On World Pulmonary Hypertension Day 2018, we will host PHun Walk4Hay in St. Louis. This event will be a 1 mile fun walk to raise awareness and research dollars for the Robyn J. Barst Fund and PHA.
Save the date and find out more about the PHun Walk4Hay on May 5, 2018 in St. Louis, MO. and follow Nicole Phillips’ journey by connecting with her on Facebook.