In Haylee’s first year of life she was on the exact growth chart as her older sister, but was hit with several respiratory illnesses. As she grew older, some of her milestones were delayed and her family began to notice that she would lose her breath while playing. At her three-year checkup, her doctor first noticed a heart murmur. Soon after she received an echocardiogram that showed a heart defect that caused pulmonary hypertension, or high blood pressure in the lungs. Now on several medications, Haylee and her family are adjusting to their “new normal” and are lovingly dedicating their time, energy and hope into advancing care for kids living with PH. Read more stories like this on PHA’s The Right Heart Blog.
Jessica York (Haylee’s Mom): Being a PHamily
When Haylee was only two weeks old I can remember looking at her and thinking there was something special about her and that she would have a special purpose. It was November 11, 2016 — when she was three — that we would hear the words pulmonary hypertension for the first time. These two words would change everything about our lives. The journey of becoming a PHamily has been a test of strength, patience, understanding, acceptance, and love. As Haylee’s Mom I’ve had to become a health care advocate and caregiver for her. Making phone calls, attending appointments, dosing medications, changing bandages, late night ER visits and hospital stays are now the new normal in our PH World. Watching your child’s body slowly give out on them is something I can’t even begin to express. The pain is beyond anything you could ever imagine. All you want to do is fix them save them, but you can’t, and that is a gut wrenching hopeless feeling. Every day you live in fear of losing your child and no one can take that fear away. At the heart of the storm is an amazing beautiful, full-of-life little girl.
I’ve cried many tears of sorrow during this but also many tears of pure happiness. Watching Haylee fight and live with PH has been the most beautifully inspirational experience I’ve ever had. Everything changed for us that day in November, as it did it for her. She did not complain, but chooses each day to embrace all that is PH Life. She didn’t let this diagnosis affect her joy for life. When things are difficult for her because of PH, she improvises and finds a way to enjoy everything. Haylee is the light in our darkest day she always can bring a smile to your face. Probably the most beautiful moment of our lives was watching her work through her fear the first time she was able to put on her dry suit — a suit used to protect the central venous cathetor that sends medication through her body. She screamed with joy “I did it I did it!!!” I grab her and just squeezed her as tight as I could as tears filled my eyes. We have used resources offered by PHA to help figure out our new normal. Most importantly, the PHA community has guided us on ways to help advocate and raise funds for research. We will never stop fighting, hoping and praying for a miracle.
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.