Nicole Phillips: Race Report #3

August 17,2022

At the age of 3, my niece Haylee would be given a prognosis of 10 years to live. Let that sink in. From the age of 3 to 13 this would mean that Haylee would be faced with an unthinkable journey. As many PH patience know all too well, PH is a rare disease that is challenging to diagnos and not often correctly diagnosed until it is too late. This was the case with Haylee as well. Born with a CHD of AV Canal Defect (2 holes in her heart), a heart murmur would not be heard until her 3 year check up at the pediatrican’s office she had gone to routinely since birth. This heart murmur would be the start of what would become our family’s PH journey.

Although Haylee was diagnosed with a heartbreaking diagnosis, we never would accept that growing old would be in her future. The phrase “when I grow up” took on a whole new meaning. When you are forced to realize death when you are a toddler, this is something that I hope you never have to feel. To think that you will never be able to have those first date jitters, feel the freedom of driving a car, to walk across a stage in accomplishment to get your diploma; that in itself is tragic. Although, Haylee would live a life filled with countless visits to the hospital, daily invasive medications, limitations of living with O2 stats lower than medical professionals could process; she loved living life and you could feel it so deeply in the way she would squeeze you. The night that Haylee left us, I felt an energy passing through me as my phone rang urging me to get to the hospital immediately. I know now that energy was our Hay. So full of life that even in her last breaths she told everyone she was OK. 

Race #3 was in honor of Haylee’s life and the amazing organization Annie’s Hope – the center for grieving kids who provided invaluable resources to Jordayn, Haylee’s older sister. Jordayn and Haylee were sisters, bunkmates and best friends. Little did we know that weeks following our heartbreak of loosing Hay, the world would shut down as COVID 19 was introduced to us all. Grief is an experience that we all will have and yet is a topic that many brush over. It is raw and unforgiving. To loose your sibling, enter a pandemic filled with isolation and then prepare to enter your Senior year of High School is more than any 16 year old should have to face alone. That is why the work of Annie’s Hope has left our hearts full and participating in this 5K was so special to our 7Runs4Hay journey.

Make a donation to Nicole’s efforts in her #7Runs4Hay here.

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