Boy fighting rare disease takes center stage at Pleasant Hill Halloween parade
PLEASANT HILL -- A young Pleasant Hill boy battling an extremely rare disease was at the center of an elementary school Halloween parade Tuesday, an event aimed at raising his spirits to help in his fight.
The joy of Halloween radiated through Pleasant Hill in the form of little Milo McCormack's infectious smile.
Dressed as an excavator -- a costume meticulously crafted by his parents -- Milo took center stage at the Gregory Gardens Elementary School's Halloween parade.
"We spent probably like three or four days working on his costume. It goes over his wheelchair and it just makes him so happy," said Milo's mother Rita McCormack, her eyes reflecting the immense effort and love poured into every detail of the costume.
Milo's happiness on this special day is amplified by his battle against an extremely rare neurodegenerative disease. At just four years old, Milo is courageously facing the challenges presented by the disease. With less than 25 reported cases worldwide, his condition requires ongoing care and relentless hope from his family.
"It's a complicated journey," his mother said of the disease. "It's called Spastic Ataxia-5 and it's very rare."
In 2022, the McCormack family started the "Miracles for Mighty Milo" foundation, focusing on drug repurposing projects and fundraising efforts potentially reaching hundreds of thousands, if not millions, of dollars for gene therapy. Collaborating with an Italian researcher, the family is in a race against time to save Milo's life.
"Milo's health and abilities continue to decline. It's really challenging, but it's all about what we can do today for him to continue to learn and engage with others," explained Robert Shearer Preschool Principal Jessica Phillips, who is also a Special Education administrator for the Mt. Diablo Unified School District's preschool programs, highlighting the community's dedication to Milo's wellbeing.
Despite the challenges, Milo's parents remain unwavering in their commitment to bringing joy into his life. From a simple dream captured in a picture to the grandeur of a Halloween parade, every moment is cherished.
"I just don't know how many more days of joy he'll have, so I try to make each day as special as possible," Milo's mother said. She embodies the resilience and love that defines Milo's journey and the unwavering spirit of Pleasant Hill's supportive community.
More information on Milo's fight can be found at the "Miracles for Mighty Milo" foundation website.
