Behind every diagnosis is a story of strength. Our CASK Warriors are real-life superheroes — children and families navigating an ultra-rare genetic condition with courage, hope, and heart.
They face daily challenges that most could never imagine, yet they rise each day with unstoppable resilience. From first steps to first words, every milestone is a miracle. Every smile is a triumph.
👊 These young warriors are more than their diagnosis.
🦸♀️ They are brave, resilient, and extraordinary.
💙 They are the heart of the CASK Warriors Foundation.
Join us in celebrating their strength. Support the fight for a cure.
Because every superhero deserves a team.
Here is a quick video to tell you about CASK Gene Disorder and meet our CASK Warrior Anthony
🧒 Meet Leon — A Warrior with a Rare Genetic Condition Called CASK
Leon was born in 2021, a bright and beautiful baby who appeared completely healthy. For the first three months of his life, we cherished every new moment with him, soaking in the joy of parenthood and dreaming of the future.
But that dream was suddenly interrupted. Around three months old, we noticed that Leon’s head had stopped growing. That was the first sign that something wasn’t right — and the beginning of a long, emotional journey through specialist appointments, tests, and searching for answers.
After months of uncertainty, genetic testing (WES and microarray aCGH) finally gave us a diagnosis: Leon has CASK Disorder, also known as Cerebellopontine Hypoplasia, a rare neurological condition caused by mutations in the CASK gene. It affects only a very small number of children worldwide. The symptoms and severity can vary widely, but in Leon’s case, it means he will face lifelong challenges in both cognitive and motor development.
Today, Leon is 4 years old, but developmentally he is closer to 12 months. He is unable to sit up or crawl on his own, and he cannot yet walk. His muscle tone is high, making movement difficult, and his hands remain limited in function for everyday activities like eating or playing. Still, he works incredibly hard every day through intensive therapy, including Bobath, Vojta, and MEDEK rehabilitation techniques, as well as regular osteopathy and specialized early education.
🏫 Leon attends a wonderful kindergarten for children with disabilities, where he receives daily therapies and developmental support. Despite all the obstacles, Leon is full of light and laughter — a joyful, determined little boy who continues to make small but meaningful progress every single day.
❤️ We don’t know what the future holds, but we believe in him with all our hearts. He’s our superhero, and we’re proud to share his journey in the hope of raising awareness and building a stronger, more supportive community for all CASK Warriors.
☀️ Meet Sunny — A Brave and Resilient Warrior
Sunny is a true warrior in every sense of the word. Born with CASK gene disorder, a rare neurological condition, he faces each day with courage, determination, and a radiant spirit that inspires everyone around him.
🧠 His diagnosis includes microcephaly and a significantly underdeveloped cerebellum, affecting his coordination, balance, and ability to communicate. He is also bilaterally deaf and has difficulty regulating his body temperature, often overheating easily.
🩺 Developmental delays are part of his journey, and while there is a high likelihood he may develop epilepsy, we are deeply grateful that he has not experienced seizures so far.
💪 Despite these challenges, Sunny shows remarkable strength. His weekly schedule includes:
- 🗣️ Speech therapy (2x/week)
- ✋ Occupational therapy (2x/week)
- 🍽️ Feeding therapy (1x/week)
- 🏃♂️ Physical and occupational therapy at home and daycare
📚 This fall, Sunny will begin preschool—an exciting new chapter for our little hero. With love, guidance, and an unbreakable spirit, he continues to rise, reminding us all of what it means to be resilient.
❤️ With pride and love,
The Tamayo-Hardesty Family
Anthony has been a blessing to our whole family!
We were blessed when our son Anthony was born in 2020 and we knew even before he was born he was going to change the world! Anthony you are our pride and joy and we love you very much. You inspired us and helped us create CASK Warriors Foundation Inc. This is a foundation brought to reality due to our love for you and your inspiration you bring to the world everyday. Anthony is a very happy and kind and gentle boy who brings a smile and happiness to those all around him. Anthony has a positive attitude and a great imagination. Anthony loves to be held and he loves his two dogs and his Nanny and Papa and Grandma and Grandpa very much.
Anthony loves to listen to music and he will laugh with joy during the best parts of his favorite, songs, tv shows, movies, and books. Anthony we are truly blessed to be your parents and we know your courage is an inspiration to many people including your fellow CASK Warriors.
Anthony loves Selena Quintanilla, Whitney Houston, and The Beach Boys, among many others! He loves Disney TV shows and Movies especially Moana, Lion King, Lilo and Stitch, and many others. He especially enjoys being creative and playing and loves to read Dr. Seuss Books.
We love you with all our hearts ,<3
Mommy Terry and Daddy Isaac and the puppies :)
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