Eli - Navigating Through Life With Fun in His Heart Despite Not Having a Diagnosis / Undiagnosed Hero
Meet Chris Nikic, but you may already know of him! Chris is the 1st person with Down Syndrome to do an Ironman 140.6. Not only is he a hero to so many children and people with and without Down Syndrome, but Chris also has an amazing challenge he promotes - the 1% Better Challenge. The challenge is to promote Down Syndrome Awareness and consists of two steps: 1. You get 1% better for 30 days. 2. Help someone do the same.
Chris focused on making small improvements each day when training. Come race day, Chris faced challenges - red ants biting his legs, causing them to swell, crashing his bike, struggling to finish the race… however, this wasn’t just about the Ironman for Chris, this was about showing him what he could achieve in the future.
Chris said in an interview, “Do not put a lid on me”. A mentality that is sometimes difficult to have but could not be more true. Pediatric heroes and non-Pediatric heroes, find your passion, find your rhythm, don’t put a lid on yourself, and push forward! Thank you Chris, for allowing us to share your story, we wish you the best for all of your dreams and will be rooting for you on the sidelines!
January 28th is Moebius Syndrome Awareness Day and Fenrici would like to shine the spotlight on Tobias - a pediatric hero with Moebius Syndrome who is always laughing!
Moebius Syndrome affects 1 in 50,000 to 1 in 500,000 newborns. It results from the underdevelopment of the facial nerves that controls some of the eye movements and facial expressions.
“I was in shock. My sweet little boy was never going to smile.” (lovewhatmatters.com). In 2017, when Eliza, (Tobias’ mom) was 20 weeks pregnant with Tobias, the ultrasound revealed he had clubbed feet and a “...hand that looked a little unique” (lovewhatmatters.com). It was a high-risk pregnancy, but Eliza stayed resilient.
“As soon as he was born, the nurses realized he had a small and recessed jaw, so he struggled to eat” (Eliza Moody). Eliza says that, “After digesting this was just another fixable difference, I learned to stop worrying and just enjoy being his mom. He was in the NICU for 11 days”.
When Tobias came home, Eliza noticed he wasn’t smiling or blinking. She had a gut feeling and trusted it. Tobias went in for a check-up at 2 months and the doctor told Eliza he would never smile. It was eventually pieced together that Tobias had Moebius Syndrome. As hard as this was, Eliza showed her strength and resilience and became more accepting and positive about the situation. Tobias shows his happiness through laughing, dancing, and showing affection all of the time! “He truly is the funniest kid. His personality lights up every room he is in” (Eliza Moody).
There is so much strength and love that goes into having a child hero with a pediatric rare disease or disorder, and Eliza has embodied that. To be resilient and see the light even when there is some darkness is not always easy, but it helps and shows amazing bravery! There are so many rare diseases and disorders out there that many of us don’t know about. Thank you Eliza for allowing us to share your and Tobias’ special story!
Fenrici is sharing another inspiring hero story, and in honor of Dwarfism Awareness Month, meet Eden! We reached out to Eden’s mom, Missy, asking if we could share Eden’s story, and she shared with us an amazing and inspiring story. Sometimes with stories, we summarize them from the heroes’ blogs or posts - we were very fortunate to have this story shared with us directly, from Eden’s mom! Read more about Eden below!
“Eden Olivia was diagnosed with achondroplasia at 5 months of age. Achondroplasia is the most common type of short-limbed dwarfism. I dealt with Eden's diagnosis in silence at first. Not because I was ashamed ...I could not love this child more. It was mainly because I had to educate myself on all of the newness surrounding us before I could deal with questions and unwanted sympathy from others. "Oh I'm sorry" or "it could be worse" or ..."she's just small that's all ...I'm short too." Some people don't know what to say. I needed to be prepared for that. I'm sure most intentions were good ...even when they were not.
Most of all I wanted to focus on Eden and all the adjustments and medical attention she needed. I just wish I knew then …what I know now. I also wish the attending doctors were more informed about Achondroplasia. We would have different results with some of her medical concerns to date. Those doctors also scared the heck out of me with what they assumed they knew of achondroplasia, [when in fact] every case is different. Here we are 5 years later ...still learning ...but better for it.
Eden is simply amazing. She is enjoying life conquering the possibilities in a world that wasn’t built for her. I [hope for] more inclusion, awareness and acceptance for those with dwarfism. 💚💚💚 #dwarfismawareness #dwarfismawarenessmonth 💚💚💚”
You may recognize this smiling face from our page! This is pediatric hero Ellie, an adorable resilient girl with an amazing support system. Ellie is battling High Risk B-Cell Accute Lymphoblastic Leukemia. We shared Ellie’s story in January, but wanted to shed light on her brave story and follow up with her now to bring awareness to childhood cancer, as September is Childhood Cancer Awareness Month.
A month after we shared a story on Ellie, she finished day 506 since beginning treatment and finished her Delayed Intensification Phase. Ellie from that day, had 1 year, 8 months, and 4 days until she could ring the bell on October 20, 2022. Ellie underwent several chemos, several chemo pills, steroids, lumbar taps, pokes, and battles but also tribulations from last time we checked in until now. Fast forward to 285 days since beginning treatment, and Ellie had her last dose of PEG! Although Ellie was weak and tired, she was progressing and getting so much better.
Ellie approached one year since finding out she had cancer on June 19th, 2021. Ellie’s mom said, “When asked from other cancer moms how we do it when they are beginning their own journey I say: Have faith, don’t think about tomorrow, and always look for the rainbows. Put one foot in front of the other and never give up on hope”.
In one of Ellie’s mom’s Instagram posts, she says, “Ellie is progressively getting more and more tired and starting to not feel very well. She still never complains. Less smiles but never a tear either. She’s in fight mode with her Jesus again. She amazes me daily.”
Ellie shows amazing resilience and fight in her actions and words. Her mom, Ashley, shares incredibly touching insight into their lives and Ellie’s battle with Leukemia. Ellie can be an inspiration to all pediatric heroes fighting battles that other kids their ages may not understand, or even the heroes themselves. Ellie is approaching her date she can ring the bell. Fenrici is rooting for her and her courageous journey and efforts, sending prayers and support. Go Ellie!