7Runs4Hay: Nicole Phillips

April 06,2022

To know Haylee, is to love Haylee. She had two rules: 1. Have Fun 2. Be Yourself! And she certainly lived by these two rules daily. In seven years, Haylee would teach us more than most could teach in 70. In November of 2015, during Haylee’s three year checkup her doctor noticed a heart murmur for the first time. A few weeks later, Haylee was with my father at a doctor’s appointment when one of the nurses pointed out her purple fingers and lips and urged us to contact her doctor because she was worried about her oxygen. Haylee’s doctor immediately scheduled an echocardiogram. This led us to a diagnosis of a congenital heart disease (two holes in her heart), and pulmonary hypertension.

Honestly not knowing what else to do in the face of such a heartbreaking prognosis, I started a search for hope and that is when I found and was welcomed into the PH community. The following year I ran the Go! St Louis Marathon, sharing Haylee’s PH journey with every step. Following Run4Hay, PHun Walk4Hay was created and now this year I will participate in 7 5Ks in memory of my niece, Haylee.

It was not the PH Haylee was fighting that made her rare – it was the person she was. She was completely selfless and had an ability to create a unique bond with everyone she met. Adapting to every situation without complaint and smiling every day. Haylee made everyone happy, as she truly loved everyone.

Sunday April 9, I will run at the Centene Walk for Wishes. Haylee became a Wish Kid following her diagnosis and her wish to go to Disney World was granted. An experience that provided a much needed break from the daily reality of living with a complex medical diagnosis. The Make a Wish organization not only granted Haylee’s wish to go to Disney World but created many magical memories throughout her journey.

Run4Hay started in 2015 as a PHight to save Haylee’s life. Unfortunately, we ran out of time, but our PHight didn’t stop with the loss of Haylee. From the start of Run4Hay, to PHun Walk4Hay, and now 7Runs4Hay; we remain committed to find a cure in her honor and for all those that are affected by PH. If love could have saved Haylee, she would have lived forever. The reality is that PH remains a challenge to be diagnosed and treatments are still minimal. Haylee has left us with a legacy of love and we promise to continue to spread love in all that we do. She didn’t just live her life – she loved living it.

Follow Nicole on her seven runs for Haylee here.

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