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      Heroes Who Inspire All of Us

      Kingston - Preemie Hero!

      Kingston - Preemie Hero!

      Meet Kingston! This brave little pediatric hero entered the world on July 24th, 2019 weighing 1 pound and 13 ounces. Kingston was born as a preemie, which is a premature birth that occurs in roughly 11 - 13% of pregnancies in the US. His family went through an emotional rollercoaster when he entered the world; from being hooked up to several machines and trying to win this battle, Kingston showed strength as he grew and continued fighting! Kingston is still smiling and fighting today with lung difficulties and needing a Trach, but nonetheless, he is here. He is living. He is breathing. He is a gift! A mother always has a special bond with her child, however, what is so special about the relationship that Kingston’s mom, Angie, and him share, is that Angie was a preemie baby as well. Everyday since Kingston’s birth to now, 307 days later, Angie has posted updates on her instagram @angelic.beauty. From the triumphs to the hardships, she put it all out there with full transparency and we commend Angie for that! It isn’t easy - many people showcase the good on social media but that’s not reality. Reality is that pediatric complications are difficult. Sometimes parents of the heroes can feel helpless, lost, confused… it is inspiring to read and share stories showcasing these pediatric hero’s battles. It is important to bring awareness to all pediatric heroes! We applaud you Angie! We cannot imagine the strength you have but we commend you for keeping faith the whole step of the way! 

      Briella is a Cerebral Palsy WARRIOR

      Briella is a Cerebral Palsy WARRIOR

      Meet Briella and her sweet puppy Mieka! Briella is a Cerebral Palsy WARRIOR. Cerebral Palsy is a disorder that occurs in the early stages of life and affects muscle tone, movement, and motor skills. What is shown through the pictures of Briella, is the idea of “CAN”! She CAN do a multitude of things regardless of Cerebral Palsy, and she does it with a smile on her face! Thank you Briella for being an inspiring voice to other heroes who also have Cerebral Palsy!

      Heros

      Heros

      We celebrate rare diseases and disorders every day. Here is a shout out to some of our heroes we’ve had the privilege of featuring on our page. We are rooting for you and have you in our hearts every day.

      Fenrici Story of Resilience: Fatima Has Success With IVF

      Fenrici Story of Resilience: Fatima Has Success With IVF

      “My name is Fatima, I would like to share my story of resilience. After years of hoping to have a child naturally my husband Jaycee and I decided to finally seek out for help. Unfortunately at the young age of 26, I was diagnosed with low ovarian reserve, basically, I have low egg supply and only had a 5% chance of natural conception. This news devastated us and the only option to have a child naturally would be through In vitro fertilization (IVF) with only a 50 percent chance of success. After many tears and prayers later we decided to take that risk and try IVF and with the grace of God and science, we welcomed my son Cristiano at 4lb 14oz born 10-14-2014 who’s is currently 4! I can’t imagine my life without him. He completes our family. We are so lucky and blessed to have our little dude.” An amazing story of resilience told by @fatimamagg! We hope to inspire and encourage all of those who are battling any type of battle! Fenrici salutes your amazing perseverance and bravery!

      Angel Aid Offers Support for Caretakers of Rare Diseases

      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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