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.
"It's a hard reckoning to think that your child will pass away before you, and it's not fair," said Lockard. When CBS Colorado first spoke with the Littleton family, they were in Dallas with Jack, who received the opportunity to be part of a clinical trial for a gene therapy treatment for SPG 50, which was conceptualized by another father who also had a child with SPG 50. "On Dec.
6, he actually received the drug. All they do is they put a copy of the healthy gene into a viral vector and insert that into his cerebral spinal fluid through a lumbar puncture," said Lockard. The fears of w.