Toddler's Rare Disease Fight: A Mother's Plea for Research Funding

Nashville Toddler's Struggle with Nemaline Myopathy Inspires Plea for Research Funding A poignant video shared on TikTok by Kaitlyn Schara, from Nashville, Tennessee, has brought attention to the rare genetic disorder Nemaline Myopathy (NM) affecting her son, Jackson. The video shows Jackson, almost two years old, struggling to reach a toy, illustrating the physical challenges he faces. "My son turns 2 in a few days and he can't YET crawl, sit and play on his own, walk, and is primarily fed via g-tube," Schara explains in the video's caption. The video's emotional impact is undeniable, showcasing the family's love and hope for a future treatment. The lack of research funding is a major obstacle, as Schara notes, "There is NO cure and NO treatment options currently due to lack in research funding." The video concludes with a call to action, urging viewers to share the video and donate to NM research. The family's dedication to raising awareness for Jackson's condition and their plea for support highlight the urgent need for further research and development in treatments for Nemaline Myopathy.