A Mother's Love: Overcoming Challenges with a Child's Rare Disease

Raising Jackson: A Family's Journey Through Nemaline Myopathy Nashville, TN – May 15, 2025 – Kaitlyn Schara, mother of Jackson, a toddler diagnosed with Nemaline Myopathy, shares her family’s experiences in a recent TikTok video. The video shows Jackson’s struggle to sit up, highlighting the physical and emotional challenges associated with the rare neuromuscular disease. "Jackson's frustration when he tries to sit up has grown tremendously recently," Schara explains in the video. "To see him want so badly to do everything he ‘should’ be is a constant reminder of the battles he faces." The video also showcases the family's unwavering support and love for Jackson, celebrating his small victories and progress. It offers a glimpse into the daily realities of caring for a child with special needs, including physical therapy sessions and the constant search for appropriate medical supplies. The video ends on a positive note, emphasizing the joy and love that Jackson brings to their lives, despite the challenges. "It's a constant reminder that this life is not ‘normal,’" Schara shares. "But yet, the joy he brings to our life is above all." The video has resonated with many viewers, garnering thousands of views and hundreds of comments, illustrating the universal appeal of stories about resilience and family love in the face of adversity.