More than 100 families attended a on Saturday to support Johnathan Spencer, 6, who was born with Niemann Pick Type C (NPC), a genetic neurodegenerative disease that has no cure or approved treatment.
Johnathan’s mother, Rebecca Merrill Spencer, planned the drive hoping that 25 children would donate, but a total 61 courageous young donors braved the needle. The blood samples are now in the hands of researchers at the National Institutes of Health (NIH) who will use it to seek a cure for NPC, which is also known as “Childhood Alzheimer's.”
“I couldn’t believe how many people came,” Rebecca said, smiling widely as she watched Johnathan run past with a posse of friends. “The support from everyone means so much to us.”
Seven-year-old Trevor Perez was one of the children who braved the needle and still managed to smile at Anne Sanders and Renee Oropeza, the lab technicians who took his blood.
Trevor had a secret weapon: Big brother Troy, who knelt next to Trevor and let his younger brother clutch his hand when the needle went in. As soon as he made sure Trevor was in good spirits, Troy got in the chair and donated blood, too, while his mom and dad stood by proudly.
Gage Harvey, 5, watched calmly as his blood was taken and then smiled at his dad, Paul Harvey, who showed obvious relief when the job was done.
Six-year-old Delanie Monaco sat quietly while her blood was taken with her younger sister Haylie next to her, watching intently.
Jared McConnell watched the needle go into his arm and then grinned at his older brother, Hunter. When asked if the needle hurt, Jared shrugged and said, “Just a tiny pinch,” before heading off to snag one of the goody bags that Rebecca made for the children.
The South County Derby Girls were there in force, handing out goody bags, serving up pizza, and helping with the games and the jump house. Water Warehouse set up a barbecue and had plenty of food and water on hand for kids and their parents.
Gilroy’s donated the space for the blood drive, and donated the medical equipment.
Jill Abramson, Mary Bird, Kyle Middleton, Jody Morris, Renee Oropeza, Andrea Ramackers, Anne Sanders, and Karli Silacci, who volunteered their time on a sweltering 93-degree day, were never without a smile and an encouraging word for the young blood donors.
“We were overwhelmed by the turnout,” Rebecca said. “Gilroy is amazing. I am proud to be from this town.”
Children with NPC aren’t able to metabolize lipids, so cholesterol builds up in the liver and spleen, and other lipids accumulate in the brain. Extremely rare, NPC is known as Childhood Alzheimer’s because the progressive decline caused by the lipid buildup can result in dementia.
If You’d Like To Help
Grownups who’d like to support Johnathan and ongoing research on NPC can attend the third annual Fight To Cure NPC dinner fundraiser at on July 14.
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