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30 Days of PH: ‘Never Let Your Story End Where Your PH Journey Begins’
On Day 17 of “30 Days of PH” Kathy Groebner wrote a beautiful story in memory of her daughter Katie Grace.
Kathy struggled for years to get a proper diagnosis for her child. Not many physicians at that time even knew what PH was let alone how to keep an out for it. When Katie Grace was finally diagnosed she became one of the first of a handful of children to begin Remodulin via CAD Broviac pump.
Katie Grace cared a great deal about people and while living life to fullest as best she could, she also tried to help others however she could. Katie Grace passed away shortly after a heart and double-lung transplant. Her words and kind actions continue to help people to this day.
I hope you will take a moment to read Kathy’s story and share with us what touched you most about it.
Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.
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3 Replies
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Katie Grace is such an inspiration as she continues to shine within the PH community. I didn’t know her but have heard about her contagious mindset and love for life.
What an extraordinary young girl! I am sorry for your loss, Kathy. Thank you for sharing your beautiful tribute to your daughter with us. Katie Grace will continue to offer hope for many years for all that knew her and hear about her.
I love that message. We must not allow our stories to end after PH. Thais is such an important reminder for us all.
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Katie Grace was one of Cullen’s closest PH friends. They were diagnosed at the same time and seemed to go through every PH up and down together. They even received a heart and double-lung transplant a few months apart. She passed away on Christmas several years ago. She was amazing and continues to shine bright in our hearts.
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Hi @colleensteele, I thought that she and Cullen were buddies. How is it doing as we approach the holidays? Does he mention her more around Christmas?
She indeed continues to shine to those who knew her and those who read about her contagious love of life. What a beautiful young lady she must have been. I am happy that she and Cullen had each other for support managing the rollercoaster of PH. I would assume that you and her mom, Kathy, also became close.
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