Heroes Who Inspire All of Us — #Rare

Meet pediatric hero, Garrin! When Garrin was born, he spent five months in the NICU. Garrin was admitted to a Children’s Hospital and Medical Center in 2019. He had difficulty with his lungs and required breathing support and is still a patient at the Children’s Hospital now. Garrin has undergone tracheostomy, gastrostomy, and hernia repair. As well as having “...two diagnostic heart catheterization procedures, two CT scans, multiple bronchoscopies, and dozens of x-rays and lab draws” (nicumomlife.com). Our pediatric heroes go through things that some of us cannot even fathom. It takes an immense amount of bravery and perseverance for our child heroes as well as the families to battle these pediatric troubles. We want to focus on Garrin’s strength and still being here today to show his adorable smile! We are asking you all for your prayers as Garrin continues to fight! Please follow Garrin on his journey and stay updated with his posts as well as his mom, MJ’s, blog nicumomlife.com! Thank you MJ for allowing us to share Garrin’s story. We are praying for you! 😊💗

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.

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! 

“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!

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!