30 Days of PH: Don’t Stop Believing

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by Colleen Steele |

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Day 30 of 30 Days of PH⁣
Topic: Don’t Stop Believing

This is Shannin’s Story @Shanninstromhenry

Zoe Henry is a sassy 12-year-old who has had PH her entire life. She was born with a Congenital Diaphragmatic Hernia and spent her first 3 months in the NICU. She developed PH from her heart defects and the CDH. As a baby, she was on oxygen, a feeding tube, and over 15 medications. We were terrified about this unknown and scary life we were embarking on. Despite her challenges, Zoe was a happy and determined baby. At 3 she learned to walk in one day, giant Remodulin pump, oxygen and all. She has not slowed down since! Zoe loves to dance, swing, jump, ride giant rollercoasters, do gymnastics, play soccer with her dad, cook, and bake.  

Zoe had a central line for Remodulin until she was 11. Switching to SubQ Remodulin in 2019 has been a game-changer. Now she is even more active and doing more “normal” kid activities. Last summer we took her to France. It was the trip of a lifetime, but it required A LOT of planning and coordinating. We logged over 120 miles of walking (with her in her wheelchair) on cobblestone and gravel, drove 2700 miles, took dozens of subways with no elevators, carried her up hundreds of cathedral stairs, and ate ALL the gelato we could.  

Our PH family is an inspiration and a constant source of knowledge. They help through long hospital stays, heartbreaking IEP meetings, and social dilemmas. The kids are great at encouraging each other too.  

Our biggest goal is that Zoe feels happy and loved. She is a great self-regulator and knows when she needs oxygen and to rest. If she wants to try something, we pretty much let her go for it. She has a contagious laugh and never lets PH limit her. Instead, she is more determined to live each day to the fullest because of it.

Zoe might have PH, but it doesn’t have her! Her favorite 80s song, “Don’t Stop Believing” sums up her philosophy on life. We don’t know what the future holds, but she’s already made it 12.5 years longer than predicted. We do know that she makes this world a better place with her determination, compassion, heart, and joy. 

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