Our CC4C supporters help provide critical resources, hope, and community to families navigating the uncharted challenges of rare diseases like Alexis's.

Alexis was two years old when she was diagnosed with severe myopia and referred for genetic testing. She tested for one condition and it was negative. About a year and a half later, her parents noticed severe changes in her balance and ability to walk. Alexis saw a neurologist, and her MRI showed clear signs of 4H Leukodystrophy. This discovery was followed by a full genome sequencing which established the cause as POLR3B mutations.

Alexis’ condition involves a central nervous system deterioration. She has fewer myelin in her brain cells, so everything connecting to her nerves is slower. She has vision problems including CVI, Myopia, and visual processing disorder. Spasticity in her muscles negatively impacts her ability to walk and limits her balance and coordination, so she uses a walker. It is difficult for her to swallow and talk, however she can still eat and verbally communicate. She also has a tremor in her hand which strains her writing and tracing ability. Alexis’ condition affects her mood, gives her whole-body fatigue, and will continue to deteriorate before one day taking all of her abilities.

Alexis is very strong-willed. She likes completing tasks and enjoys being outside swinging. She is also fascinated with animals! She is in hippotherapy at Red Arena with horses and developed a deep affection for them. She also loves dress-up and anything princess. She is passionate about music and dance and takes dance classes. Being around her cousins and friends makes her very happy!

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 Alexis'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.