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What Makes You, A Caregiver, Rare?

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    • #23242
      Colleen Steele

      In my column this week, “Daring to Be Rare by Believing in the Power of Hope,” I shared examples of how I’m aware that I’m rare. As a caregiver to a child who had PH and then a rare heart and double lung transplant, I’ve had to make decisions and help my son through experiences that are thankfully not common for most mothers.

      For example, “Cullen was in fourth grade when he started expressing concern that he was going to die young. I had never heard of PH before his diagnosis. Trying to console my child with hope regarding a disease that at the time I knew little about was beyond difficult.”

      What makes you rare as a caregiver to a loved one with PH? What experiences make you different from other parents, caregivers, etc.?


    • #23271
      Jen Cueva

      I so love this @colleensteele. Caregivers are certainly rare and much appreciated.

      I cannot even imagine the pain and trials that you caregivers go through, especially with your children. Hugs to you.

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