A rare and deadly disease called SPG50 affects fewer than 100 people worldwide, and one of them is Naomi Lockard, a 3-year-old girl from Colorado.
An experimental gene therapy has shown promise in halting the disease’s progression, but it is far too expensive for most families.
Rebekah Lockard, the girl’s mother, is on a mission to raise the funds needed to save her daughter’s life.
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Spastic paraplegia 50 (SPG50) is a neurological disorder that affects childhood development, progressively leading to cognitive impairment, muscle weakness, speech problems and paralysis, according to the National Organization for Rare Disorders.
Most people with the disease will die before they reach their 20s.
A rare and deadly disease called SPG50 affects fewer than 100 people worldwide, and one of them is Naomi Lockard, a 3-year-old girl from Colorado (pictured right and with her family left). (Rebecca Lockard)
When Naomi Lockard was born in 2017, her parents immediately noticed developmental delays.
Around six months old, when she was “still not really moving,” Lockard said, they started putting the baby through physical therapy, which didn’t help.
Finally, an MRI and a full panel of genetic tests revealed the shocking diagnosis of SPG50.
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At the time, Lockard was just a month away from giving birth to her second child, which added another element of fear given that the disease is genetic.
“My husband and I each have a healthy copy of this gene, but we each have a mutated copy,” she told Fox News Digital in a telephone interview.
“Naomi got both mutated copies, and there was a 25 percent chance that Jack got both mutated copies as well,” Lockard, pictured with her family, told Fox News Digital. (Rebecca Lockard)
“Naomi received both mutated copies, and there was a 25% chance that Jack (the second baby) would also receive both mutated copies.”
“At first there was a lot of panic, a lot of tears, because it’s a horrible disease,” Lockard said.
A few weeks later, after Lockard gave birth, another round of genetic testing revealed the family’s worst fear: baby Jack also had SPG50.
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“Children with SPG50 may experience early developmental delays, muscle weakness and spasticity, but they continue to struggle and adapt,” said Dr. Eve Elizabeth Penney, Texas Department of State Health Services epidemiologist and chief medical officer.
