Navigating Your Child’s Rare Disease

When Nikki McIntosh’s son Miles was less than a year old, he was diagnosed with a form of the rare neuromuscular condition spinal muscular atrophy. Since then, she has needed to learn how to manage the complexities of her own life while managing Miles’ care, coordinating his providers; and navigating the medical, financial, and emotional aspects of raising a child with a rare disease. McIntosh has shares her experience in a book intended to help others new to the journey of caring for a child with a rare disease. We spoke to McIntosh, author of “Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease,” about her book, the medical, emotional, and logistical challenges faced by rare disease families; and the importance of making time for self-care.