Confessions of a Rare Disease Mama
Turning Pain into Purpose: Rare Mama, Ashley Haywood’s Advocacy for Sanfilippo Syndrome
In this deeply personal episode of Confessions of a Rare Disease Mama, I sit down with Ashley Haywood, a devoted mother and passionate advocate for her 8-year-old daughter, Sadie, who is living with Sanfilippo syndrome. Often referred to as "childhood Alzheimer’s," Sanfilippo syndrome is a rare and progressive genetic condition that profoundly impacts children and their families.
Together, Ashley and I explore how our children's life-changing diagnoses reshaped our lives in ways we never expected. We reflect on our shared experience of initially retreating from our communities after receiving devastating news, a natural but isolating response to overwhelming grief. We also discuss the transformative journey that followed as we found purpose, strength, and connection in advocacy and community support.
Ashley shares her family’s path from diagnosis to their current reality, highlighting the challenges and triumphs of raising a child with a rare and terminal disease. From navigating clinical trials to building awareness for Sanfilippo research, and then navigating divorce in the midst of it. Ashley’s story is a testament to the resilience and unwavering love of rare disease families.
Follow Sadie's journey on instagram
Learn more about Sanfilippo syndrome here
Shop Sadie Rae merch here (Proceeds to to Cure Sanfilippo Foundation)
Resources & Links for this episode:
- Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
- Learn more about our brave warriors: saveromanandstella.com
- Support our family: GoFundMe
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