When It All Fades Away
Anne Feit
When It All Fades Away is a memoir that chronicles Anne Feit's journey living with a rare lifelong bone disease through chronic pain, numerous surgeries, personal loss, and healing. With honesty and resilience, she reflects on the challenges of illness, family, faith, and finding hope in difficult seasons. Her story offers encouragement and inspiration for anyone navigating the physical and emotional complexities of living with a rare disease.
My Bumpy Bones and Me
Kelly Hedin
My Bumpy Bones and Me is a children's book that follows Riley and his sister Reese as they navigate life with Multiple Hereditary Exostoses (MHE). Through their daily adventures—X-rays, hospital visits, and time with loved ones—the book offers a comforting and relatable guide for families dealing with this rare condition. Written by a mother of two children with MHE, it provides valuable insight and support for parents and kids alike.