Heroes Who Inspire All of Us — #RareDiseases

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.

“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!

“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?”

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!