Day 20 of 30 Days of PH
Topic: PH Angel Warriors Empowering Advocacy
This is Julie’s Story @JulieKeeton
The Pulmonary Hypertension Mom life seems like a lifetime ago, but the wounds of how it ravaged Weston’s tiny body are still so fresh in our hearts. PH is what nightmares are made of. Our family is so thankful that he had a tremendous care team who loved him and gave him a fantastic life and fueled our hope for a cure in the future.
We don’t advocate “just” because we had a child with a severe heart defect paired with rare lung disease. It wasn’t that PH almost tore our family apart. It wasn’t the missed holidays or family outings.
We advocate because it was listening to him struggle to breathe every minute. It was looking into his eyes and wondering if he was going to die. It was explaining that he needed another child’s organs in order to live. It was explaining to him that his best friend had died from the exact same disease he was battling and him asking if he was going to die too. It was PH crisis. It was knowing his Kindergarten graduation might be his only graduation. It was sending him to the Children’s Hospital of Philadelphia prom knowing it could be his only prom ever. It was knowing that his Make-A-Wish might be the last family vacation we were ever going to go on together.
It was being a nurse, respiratory therapist, pediatrician, infectious disease expert, compound pharmacist, therapist, cheerleader, and most importantly-his parent.
It was seeing him fight every day to make the most of his time here on earth by battling PH with all of his might and making us all laugh so much.
It was leaving the hospital with a car seat for a child who would never sit in it again.
We continue to advocate because of that never-ending code bell ringing in my soul. It’s wondering what he would look like and be like at 14. It’s our kids asking if they or their children will have heart and lung defects. It’s feeling like our family is never complete.
The Angel Warriors did not lose their battle with PH but, instead, empowered everyone they touched to fight harder and fund more research to end Pulmonary Hypertension.
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