In a world where rare diseases often leave families feeling isolated and overwhelmed, one mother’s journey has transformed grief into a powerful force for community support. Megan Schomer, founder and CEO of Raise for Rare, shares her deeply personal story of navigating the complex medical world with her son Corwin, who was diagnosed with a rare combination of brain malformations that ultimately took his life at age four and a half.
Megan’s story begins during pregnancy when doctors noticed something unusual with her second son’s brain development. After his birth, the family embarked on a challenging journey of specialists, seizures, and uncertainty. While desperately seeking answers, they received a devastating diagnosis from a specialist at Seattle Children’s Hospital who had only seen one similar case before. Despite this heartbreaking news, Megan made the conscious decision to focus on quality of life rather than dwelling on its expected brevity, taking Corwin on adventures across the country and creating meaningful memories as a family.
What sets Megan’s experience apart was her determination to address the gaps she observed in pediatric healthcare systems. Following Corwin’s passing in November 2012, she channeled her grief into founding Raise for Rare, which received its nonprofit status just three months later. The organization focuses on practical support for families caring for medically complex children – services often overlooked by other support systems. House cleaning, lawn care, snow removal, and support groups address the real-world challenges these families face daily, particularly recognizing that most medically fragile children receive care at home rather than in hospitals.
Perhaps one of the most striking revelations from Megan’s work is the sheer number of families navigating similar journeys in the Treasure Valley alone – over 7,400 children classified as medically fragile or complex. These families manage intricate medical regimens involving feeding tubes, respiratory support, medication schedules, specialized equipment, and constant coordination between multiple specialists. The unrelenting nature of this care – 24 hours a day, 365 days a year – creates an enormous burden on parents who must become experts in medical care while advocating for their children across fragmented healthcare systems.
Raise for Rare creates a vital community for these often-isolated families, offering both practical assistance and emotional connection. Their support groups facilitate sharing of “life hacks” and medical knowledge between parents who understand each other’s unique challenges. The organization also recognizes the needs of siblings – often called “glass children” because they can become invisible in families focused on medical crises – with special events designed just for them.
The impact of Raise for Rare extends beyond direct services to advocacy within healthcare systems. Megan’s influence helped establish pediatric palliative care services in the community, recognizing the critical need for goal-setting and coordinated care when families face impossible medical decisions. Her personal experience navigating contradictory specialist recommendations informed this vital addition to pediatric healthcare infrastructure.
As Megan eloquently states, “In the Western world, we kind of look away from things that are hard and things we can’t fix,” which explains why these families often remain in the shadows. Raise for Rare brings these families into the light, creating community, providing support, and reminding us all that these neighbors, friends and families deserve our attention and care. Through fundraising events, volunteer opportunities, and awareness campaigns, the organization continues to grow its impact while honoring Corwin’s memory through meaningful action.
