Josiah (Joey) Scaparotti was born a perfectly healthy baby on March 2, 2014 – it was love at first sight. The first eight months of Joey’s life was a blissful haze of overflowing love, sleep deprivation and joyous moments of watching our two young boys erupt in contagious laughter after endless games of peek-a-boo.
When Joey was 10 months old we noticed some developmental delays in his motor skills. Whereas our oldest son, David, was an early cruiser, talker and walker, Joey didn’t have the strength nor the coordination to get into a crawling position or pull himself up to stand.
We spent hours researching everything from autism and sensory processing disorders, to brain tumors, hydrocephalus, cerebral palsy and various midline defects. We were desperate for answers and determined to help our son in any way possible.
At 12 months, we enrolled Joey in physical therapy, hoping to help his development. However, Joey continued regressing and soon we found ourselves in the waiting rooms of countless specialists.
Finally, an eye exam revealed cherry red spots in both of Joey’s eyes. Enzymatic testing confirmed the severe deficiency of a critical enzyme. The diagnosis was devastating: Joey had infantile GM-1, a rare fatal neurodegenerative disorder. Beyond heartbroken we were immediately thrust into a world we didn’t know existed. We heard terms like seizures, inability to swallow, difficulty breathing and symptom management.
The early days were lonely. Joey’s disease is extremely rare, which meant little information, few resources and difficulty finding experts and accessing treatment – not to mention the frustration of trying to coordinate care between a large team of specialists.
We soon learned that the combination of a rare diagnosis and a large team of healthcare providers requires strong advocacy skills. Because modern medicine focuses on treatments and cures, medical professionals are often not equipped to support families of terminally ill children.
We also learned that providing complex care around the clock can be all-consuming and exhausting. That’s why self-care is so important. It builds resilience and healthy coping skills, which are essential for keeping mentally and physically fit. This journey needs strong caregivers, relationships and families. And while family, friends and even strangers want to help, they often do and say nothing because they don’t know what to do or worry about unintentionally making an already excruciating situation worse.
Joey died in August of 2017. Though he faced some of the worst circumstances any child could, his life, tenacious spirit and bravery changed countless other lives. He taught us that life is about loving each other, not being afraid of finding new paths and having the courage to believe that even the darkest night will end and the sun will rise again.
B Brave Foundation is not the legacy of a courageous child that fought hard and didn’t make it. It’s a story of love. It’s about helping each other by acting for change and making a difference. About reducing unnecessary suffering and building bridges to a brighter and better future.
Sara & Sam Scaparotti