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      Heroes Who Inspire All of Us — #patientadvocacy

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      Exton - A Positive, Smiley Young Boy Despite Some Hurdles Including Open Heart Surgery at a Few Months Old! / Down Syndrome

      Posted by Claire Brill ·

      Exton - A Positive, Smiley Young Boy Despite Some Hurdles Including Open Heart Surgery at a Few Months Old! / Down Syndrome

      This handsome boy is Exton, or as Exton’s mom calls him, “homie with an extra chromie”, welcomed into this world February 28th, 2017! Shortly after Exton was born, he had to get a NG (Nasogastric) tube which he had for a bit as he refused a bottle. Between potential fluid in his lungs, open heart surgery at a few months old, several moves to the CCU and more, Exton finally made it home August 16th, 2017! Exton has been a brave warrior since birth to now, including going to the Children’s Hospital of Alabama in 2019 for some sickness but he came back strong and is doing well!
      There have been ups and downs, as there are with any pediatric hero, but it is clear how loved Exton is and how much he loves his family. Exton’s page, @extra_exton is filled with photos of Exton smiling ear to ear, but also real and vulnerable moments. We thank Exton’s mom for allowing us to share a small glimpse into who Exton is and we encourage you to find out more! Exton’s page is sure to bring a smile to your face and love to your heart. ♥️

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      Angel Aid Offers Support for Caretakers of Rare Diseases

      Posted by Kristi Treder ·

      Angel Aid Offers Support for Caretakers of Rare Diseases

      “From a fairytale family to losing three brothers to a rare disease, maternal advocate @cristololoughlin draws on personal tragedy to ease the suffering hearts of others. Her inspiring stories of three (3) courageous women, reveal the secrets to sustainable self-care and wellness amidst death, disease and the realities of long-term caregiving. There is a purpose to our pain. With a guided meditation and her signature infectious enthusiasm, Cristol gently nudges us all to move beyond “Why me?” into “What can I do to help others?”“From a fairytale family to losing three brothers to a rare disease, maternal advocate @cristololoughlin draws on personal tragedy to ease the suffering hearts of others. Her inspiring stories of three (3) courageous women, reveal the secrets to sustainable self-care and wellness amidst death, disease and the realities of long-term caregiving. There is a purpose to our pain. With a guided meditation and her signature infectious enthusiasm, Cristol gently nudges us all to move beyond “Why me?” into “What can I do to help others?”“From a fairytale family to losing three brothers to a rare disease, maternal advocate @cristololoughlin draws on personal tragedy to ease the suffering hearts of others. Her inspiring stories of three (3) courageous women, reveal the secrets to sustainable self-care and wellness amidst death, disease and the realities of long-term caregiving. There is a purpose to our pain. With a guided meditation and her signature infectious enthusiasm, Cristol gently nudges us all to move beyond “Why me?” into “What can I do to help others?”Check out angelaidcares.org to learn more about the services that Angel Aid offers support for caretakers of rare diseases!

      “From a fairytale family to losing three brothers to a rare disease, maternal advocate @cristololoughlin draws on personal tragedy to ease the suffering hearts of others. Her inspiring stories of three (3) courageous women, reveal the secrets to sustainable self-care and wellness amidst death, disease and the realities of long-term caregiving. There is a purpose to our pain. With a guided meditation and her signature infectious enthusiasm, Cristol gently nudges us all to move beyond “Why me?” into “What can I do to help others?”

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