Up until this point Fenrici has shared stories of diagnosed Pediatric Rare Diseases, however, it is important to us to also share stories in which the hero is finding a diagnosis. Every Fernici purchase gives back to Global Genes to fund the research and education of rare diseases. We are hopeful that with awareness and research, these heroes can find a diagnosis on their journey!
This Undiagnosed Rare Disease Day, Fenrici wants to shine the spotlight on ElI! Eli is 10 years old with a creative and fun spirit who likes to do experiments and cool activities! He is described as spontaneous with a creativity beyond imagination. What you don’t see though when you look at Eli is high blood pressure, recurrent respiratory infections, low muscle tone, reflux, developmental delays, and more. Eli has been living with an undiagnosed rare disease for 10 years.
Eli has been battling his undiagnosed rare disease since birth. Eli also sees 10 specialists and takes medications 7 times a day. With Eli’s disability being “hard to see”, some people may think that Eli is just misbehaving or jump to conclusions without understanding. Additionally, with no diagnosis, it can be difficult to know what Eli needs or how to help him. However, his family does a great job helping him grow!
Eli is a fun and happy kid, but he also experiences moments of not following directions, not understanding social behaviors and interactions, unaware of danger and more. Eli’s mom shares how in order to help shape Eli’s behavior, she had to alter hers; “Eli taught me not to judge and to put aside my expectations. He taught me a different level of connection because no matter what he does I learn to look at him with my heart, with kindness, compassion, and love”. In addition to that, Eli does lots of projects, learns new skills and continues to practice them, as well as recently starting Hippotherapy (horse therapy)!
A lot of children are still searching for their diagnosis. Share this if you think it can help!
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