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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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Jessica York - phaware® interview 193

Sep 28, 2018

Jessica York is a pediatric pulmonary hypertension caregiver to her 6 year old daughter Haylee.  In this episode she discusses Hay's diagnosis and the importance of pediatric PH research.

Haylee lost her battle with PH on 2/11/2020

Click here to visit Haylee's PHun Walk 4 Hay page.

 My name is Jessica York and I'm a pulmonary hypertension caregiver.

We knew nothing was wrong with Haylee until age three. At her three year old checkup her doctor heard a heart murmur for the first time. He was going to wait a month and then see if he heard it again, and then schedule an echo. In the meantime, her grandfather had been paralyzed and she'd been going to weekly appointments with him. They noticed her blue lips and her blue fingernails, so they urged us to call our pediatrician, which we did.

She had an echo that same week and we found out she has a complete arterial ventricle heart defect as well as pulmonary hypertension. So that very same week, that Friday, she was admitted into St. Children's Hospital and she had a heart catheterization where we learned that she had severe pulmonary hypertension.

We were devastated, angry, like “What is this doctor telling us, that our child's dying? She was just fine a day ago.” So it took a lot of time to sink in, a lot of educating ourselves, reaching out to the PH community before we banded together and said we're going to fight this and do what we can to help save Haylee and everyone else with this.

We started an annual walk that we just had our first walk this year called PH PHun Walk4Hay, which 100% of the proceeds are going to the Robyn Barst Foundation for research for pediatric PH patients. So we just spent a lot of time doing that, getting that whole walk together. And it was actually a very big success this year. We met our goal of 10K and still going. In ends in September.

Research is important for pediatric pulmonary hypertension because there's only one approved treatment for children. Haylee's on that but she's also on two medications that aren't even approved for children, but that's her doctor's only choice to treat her. So we just need more research to find out better ways to treat this and ultimately, of course, a cure.

PH changes everything you ever know. Just know it's definitely going to change everything about your life. You just have to educate yourself, connect with other people, find people that are going to be supportive for you, and then advocate which way is best for you.

I would say her doctor was pretty up front with her about what was going to happen and how serious the disease was. It took a lot of time for us ourselves to let that sink in, but I think he did a good job of letting us know that this is very serious and this is going to change your life and it's going to be complicated.

You just have to take it day by day and then learn it and it will become basically your new way of life, which it has. And Haylee has been our inspiration. So Haylee's the one that keeps us laughing. None of it bothers her and she finds a way to enjoy life no matter what.

My name is Jessica York and I'm aware that I'm rare.

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