You wouldn’t know just by looking at the smile on her face, but 3-year-old Naomi Lockard’s life is nothing like other children’s.
“When Naomi was a baby, we had a lot of questions about why she wasn’t meeting milestones, why she wasn’t crawling on time, why she wasn’t talking,” said Rebekah Lockard.
Both Naomi and her 1-year-old brother, Jack, were diagnosed with an ultra-rare neurological disorder called Spastic Paraplegia 50, which was passed down through two corrupted copies of the same gene from Rebekah and Evan Lockard.
It is a neurodegenerative condition, which means it becomes harder for kids who get it to reach developmental milestones as they get older. It causes spasticity, starting in a child’s legs, and it is capable of taking away their ability to use their hands and feet as well as their mental capacity. In some cases, they could become wheelchair-bound or even die at a young age.