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Day 12 of #30DaysofPH: I Help My Daughter PHight Her Son’s Shone’s Complex
Candace Ead tells the story of her grandson, Michael, who at only 1 day old, was diagnosed with a congenital heart defect known as Shone’s complex. He had his first open heart surgery at 6 weeks old. A few weeks later, he was discharged from Texas Children’s Hospital. And this is where Michael’s pulmonary hypertension story begins.
Michael was never expected to make it out of the hospital alive at 8 months old, but he is now 6 years old and thriving. Candace is sure she has PTSD and anxiety from Michael’s many PH crises but she always tries to keep those thoughts at bay.
“He lives life to its fullest, so I will too.”
Thank you for sharing your story with us Candance!
Now back to our PH Community: What does living “life to its fullest” mean to you?
To read the rest of Candace’s story and learn more about Michael, click here.
Our #30DaysOfPH initiative is running for the entire month of November. Each day, we are featuring a different story, and a different view of life with PH. To read all of the stories, visit our website.
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2 Replies
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Wow, this must have been a scary time for little Micheal and you and your family, Candance. I can’t begin to imagine his little heart and the PTSD and anxiety he continues to struggle with at such a young age.
Living life to the fullest is something I have found that our young PH patients can inspire us to do. His care at Texas Children’s, I know, is excellent. I worked on a PHKIDS4ACURE event in Houston years ago. The pediatric PH team from TCM came and spoke at this event. They were all so passionate.
It must be challenging to manage care for young Micheal. I’m so grateful to know he is thriving now, and I pray this continues as he lives his best life each day!
As a long-term adult PH patient, living my best life means deciding to sell our home in Texas and move to a small condo in San Diego. It’s where I can breathe better and get out and do more. It can also mean small things like pushing myself to enjoy something I thought I couldn’t do.
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I love hearing stories like this, “…never expected to make it out of the hospital alive at 8 months old, but he is now 6 years old and thriving.”. I’m sure it hasn’t just been the success of procedure and treatments that has helped Michael thrive but also a loving and supportive family.
Living life to the fullest to me means simply finding happiness in day to day life.
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