Heroes Who Inspire All of Us

“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!

This sweet, smiley girl is Lily! But don’t let the smile and bravery fool you - this little girl has been fighting a battle since the day she was born, on August 11, 2018, weighing 1lb and 1.2oz. She was born a twin preemie, and sadly lost her sister, but with every month she got bigger and by December, 5 months after her birth, she was 8lb and 4oz. After 150 days of using a endotracheal tube, Lily had a tracheotomy to insert a breathing tube directly into her trachea to help her lungs heal and grow. As well as having a tracheotomy to help with her lungs, she also gets Chest Physiotherapy to help break up thick secretions produced by her lungs. Although using a gastrostomy tube, her family is hopeful that signs she currently shows, allude to that she will be able to eat by her mouth one day. She has therapy 3x a week to work on physical therapy, occupational therapy, and speech therapy. From being able to try a bottle for the first time in February, to working on motor skills, being 13lb and 4oz in March, adapting to a home ventilator for breathing in April, coming home after 255 days in the NICU, starting to talk, overcoming some breathing scares, fighting trach infections, and dealing with partial hearing loss, her smile is never lost. Respect can not be given enough for this child warrior to still have a smile on her face at the end of it all. Every day is a new journey and a different, unexpected path, but with the love of Lily’s family, and her personal strength, Lily will keep defying the odds and exceeding expectations! Thank you for letting us share your story.

This little pediatric rare cancer hero is Evan! Evan was diagnosed with high risk neuroblastoma in January of 2017. Three months after diagnosis, Evan went through round 3 of Chemo and it went amazing! Shortly after, his hemoglobin levels wavered and due to being neutropenic, he had a high fever following with a seizure. He received transfusions and although his blood tests weren’t very good, they had improved. Evan had a bacterial infection in his chemo port and had to have surgery. With continuous fevers and low blood counts, finally good news was received in April when Evan’s family found out that his tumor was half the size as it was in January. From transfusions, to hospital visits, nausea, liver surgery, and to recently, Evan’s neuroblastoma relapsing… Evan has been through a lot. And to think he’s only two is incredible, as well as his fight. To be two and go through all of this is amazing and inspiring, and his strength will continue to show and push him through this. We wish the best for you Evan! Follow the tagged page to follow Evan’s story. It is hard to grasp why these horrible diseases occur in children, but Evan is an inspiration with his frequent smile and strength despite his neuroblastoma. You will be in our prayers, Evan! Thank you, Evan’s family, for sharing his touching story with us. 

Meet 14 year old Mason and 11 year old Sadie, each individual in their own interests and hobbies! However, they do share a progressive, degenerative disease called Ataxia-telangiectasia, also known as “A-T”. A-T is a rare genetic disease that appears in early childhood and affects 1 in 40,000-100,000 babies. A-T affects body systems such as the brain, lungs, and immune system and is accompanied by many different features, of which can mirror symptoms associated with cerebral palsy, muscular dystrophy, and certain lung disorders. They are also much more likely to develop cancer, particularly leukemia and lymphoma. While there are different probabilities of a child having certain characteristics of A-T, one characteristic is certain. Specifically, 100% of children with A-T experience relentless loss of muscle control due to brain cell death that affects their walking, speech, swallowing, and reading. This disease has currently no cure and no way to slow the progression. However, A-T doesn’t slow down Mason and Sadie as they continue to enjoy life. Sadie loves art and chocolate and adores unicorns, while Mason loves football and play games! Mason and Sadie fundraise the charity A-T Children’s Project that specifically works with A-T while doing innovative research, developing potential therapies, organizing scientific conferences and sponsoring a multidisciplinary clinical center for A-T. We hope you continue to love life and greet each day with these adorable smiles. Your friends at Fenrici are rooting for you, Mason and Sadie!