Heartbroken family shares the emotional journey of brave Sadie, eight, who is battling the devastating Sanfilippo syndrome, a rare and terminal condition often referred to as ‘childhood Alzheimer’s.’ The cruel disorder attacks her brain, leaving her with severe cognitive decline and developmental delays. Diagnosed at just three months old, Sadie’s family is on a mission to raise awareness and funds by documenting their heart-wrenching journey.
Sadie’s aunt, Jessica Haywood, has gained over 225,000 TikTok followers by sharing intimate moments of Sadie’s life. “She shows the world that joy and grief can coexist,” says Jessica. But as Sadie’s memory, mobility, and speech worsen, capturing those precious moments becomes harder.
Despite the heartbreaking prognosis, Sadie’s mum, Ashley, is determined to focus on the present, cherishing every moment with her daughter. “I hope her story creates more acceptance for neurodivergent people,” she says, as they continue to fight for a cure.
Support Sanfilippo research at CureSanfilippoFoundation.org.