“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 💚💚💚”
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!
“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?”
]]>Mattie was one of four siblings that were all claimed by a rare neuromuscular disease at a young age. However, he did not let his disease emotionally "claim" him as he spoke to thousands of people, sharing messages of hope and peace and advocating for improved hospice laws. He wrote several New York Times bestselling books and was featured on many talk shows. The timeline goes on of incredible feats that Mattie accomplished before passing the messages onto his mom, and eventually passing on.
He leaves his legacy and inspiration, and leaves us with resilience. Those claimed by pediatric rare disease need more time, we hope someday we can help give it to them with every donation.