Our CC4C supporters help provide critical resources, hope, and community to families navigating the uncharted challenges of rare diseases like Madyson's.
It took seven years to get a diagnosis for Mady. There are fewer than 500 children worldwide with KAT6A, but most of them have even more severe symptoms than her. She is nonverbal with Intellectual Developmental Disabilities, motor planning challenges, controlled seizures and some challenges chewing and swallowing. In the fall of 2021, she fell ill and was diagnosed with severe Lupus and arthritis, which are still a struggle to manage.
Mady needs one-on-one assistance with many of her self-care tasks and uses modified sign language and assistive technology to communicate. She experiences daily pain and fatigue as a result of her Lupus and arthritis, and she takes many medications and supplements to keep her health stable. Her Autism and sensory sensitivities add some irrational fears which limits her ability to participate and travel with her family, and she sometimes requires a wheelchair.
Despite these limitations and hardships, Mady loves music and dance. She is particularly fond of country music and Blake Shelton. Mady is also passionate about abstract painting, likes to colors using dot markers, and enjoys playing with wooden puzzles. While she is nonverbal, Mady is very interested in learning to read and loves school. She has used sign language to communicate since 2nd grade, and wants to be a teacher one day.
Every day, our families face uncertainty about their child's health, financial burdens, and isolation.
Every day, new families face an overwhelming diagnosis, unsure of where to turn.
Your year-end gift ensures families won’t face this journey alone. With your help, we can continue offering life-changing programs, advocacy, and support for Madyson's family and many more.
Together, we can make 2025 a year of hope for families who need it most. Please consider a tax-deductible donation today and help us reach our goal of raising $25,000 for CC4C's mission.
