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      Heroes Who Inspire All of Us — #globalgenes

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

      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. ♥️

      Jackson - Miracle Baby with A 1 in 20,000 Diagnosis! / Osteogenesis Imperfecta

      Jackson - Miracle Baby with A 1 in 20,000 Diagnosis! / Osteogenesis Imperfecta

      This little pediatric hero is Jackson! Jackson was born in March and was diagnosed before birth with, “ … a unique mutation on the COL1A1 gene which pointed to Osteogenesis Imperfecta” (www.andthestorybegins.com - Jackson’s mother’s blog). Osteogenesis Imperfecta are genetic disorders that mainly affect the bones making them more prone to fracture. OI occurs in approximately 1 in 20,000 individuals and can be diagnosed after the birth. Fast forward to Jackson’s birth - he was delivered by c-section and was reported to be stable and breathing well on oxygen. Jackson was a miracle baby… and delivered in the midst of a pandemic! A lot of faith and hope goes into pregnancy, especially when things don’t always go as planned. Abby and her family remained hopeful and took Jackson’s pediatric battle by storm. We are very thankful that Jackson was able to be delivered safely and is continuing to be a pediatric hero! We hope this story can inspire other moms experiencing pregnancy right now during CoVid as well as moms who may have pediatric battles. Fenrici is praying for the safety of our pediatric heroes, and we appreciate you! Thank you Abby for allowing us to share Jackson’s story. Read more stories like Jackson's at our Amazon Store Hero Page: https://amzn.to/31onwhm

      Penny - Living a Life Without Pain and Limitations! / Fibular Hemimelia

      Smiling Penny featured with her colorful leg cast.

      This is Penny! Penny is a pediatric hero with fibular hemimelia. Fibular hemimelia is a rare disorder that occurs in only 1 in 40,000 births where part or all of the fibular bone is missing. It was a difficult decision on what to do with Penny’s leg but the family ultimately decided to amputate it, “... to give her the best conditions to live a life without pain and limitations”, as told by Penny’s mom, Angelica. A brave and hard decision to make but Penny is sporting her cute and colorful cast with a smile on her face! Penny is able to engage in activities and continue on with her life without limitations! Penny meets with other kids who have had amputations and shows them that they have a friend in this. Our pediatric heroes show that despite a battle they may be fighting or have overcome, it doesn’t have to stop you from living your life and doing so with a smile! Thank you Penny and family for allowing us to share your great story and inspire others.

      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?”

      Resilience Means.... From Pediatric Rare Disease Hero, Autumn, and Her Family

      Resilience Means.... From Pediatric Rare Disease Hero, Autumn, and Her Family

      Words from @melissac3233 about what resilience means to her family and their daughter Autumn! “@fenrici donates a portion of proceeds towards rare genetic diseases research and education.
      Hello, Meet my daughter Autumn 😊 She has 10 rare genetic diseases. 7 are still pending research and information.
      However, The 2 top major ones are MELAS Disease- Non treatable & curable. Progressive as well. We are unsure how she will progress through this disease as results are still pending on her true % for the disease. The next 1 is SPTAN1, Autumn is the 10 known person in the world to carry this rare seizure disorder. The minor 1 is 1Q21.1 microduplication. Variable in symptoms. To date Autumns symptoms from all diseases combined are Seizures, ADHD, Tremors, lazy eye, very mild hearing loss, muscle weakness from the waist down, some muscles are non functioning (muscles in the ears and intestines) She takes daily medication and often is in pain. You’d never know it meeting her or even just looking at her. She’s so witty, kind, has a big heart, and very generous. Thank you @fenrici for the appreciated continued efforts to support rare genetic diseases and for sending my little girl such an awesome backpack! It’s so roomy and has a lot of storage to store all goodies she needs for either school or even long hospital stays! 👏🥰🥰🥰😘😍” thank you for sharing this story of resilience! We are happy our Fenrici backpack is able to accommodate your needs and even more happy we were able to share your story to inspire other heroes!

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