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Colorado family pushes for more funding, awareness around rare neurological disorder
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.
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.
CBS
The fears of what SPG 50 could do to her son quickly started to numb. Following his treatment, the family saw immediate improvements in his behavior and development.
“We’ve seen his cognition just flourish and his physical milestone takes off too,” she said. “He’s still about 3 months behind his peers, but he’s tracking. He’s not falling further and further behind.”
While the Lockards remain confident this therapy treatment will continue to slow down the effects of SPG 50 on Jack, she is now worried her daughter might not get the same opportunity.
“This is a clinical trial, and it needs money to run,” said Lockard. “There’s not enough money to do the next phase of it [and] to make sure that Naomi and kids like her get treated, too.”
While Jack continues to undergo treatment for the next five years, this family still has not given up hope for Naomi’s recovery. The couple started Naomi’s Corner Foundation this past year, joining other parents across the country in raising roughly $1.5 million to keep this clinical trial going.
“Any parent or anyone who loves a child can understand the drive to make sure that their lives are the best possible,” said Lockard. “That they live free of pain, and that they’re able to experience the world and have fun.”
naomiscorner.org
Lockard says there is no stopping this fight until people like Naomi have access to this treatment, and she hopes that standing up for this rare disease will cast a light on finding solutions to and funding them in all different kinds of cases regarding rare diseases.
“The worst-case scenario is that she is wheelchair bound, that she’s not able to ever communicate with us and passes away in the prime of your life,” said Lockard.
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CBS News
McDonald’s investing $100 million to lure customers back to the fast food giant after E. coli outbreak
McDonald’s is investing $100 million to bring customers back to stores after an outbreak of E. coli food poisoning tied to onions on the fast-food giant’s Quarter Pounder hamburgers.
The investments include $65 million that will go directly to the hardest-hit franchises, the company said.
The U.S. Centers for Disease Control and Prevention has said that slivered onions on the Quarter Pounders were the likely source of the E. coli. Taylor Farms in California recalled onions potentially linked to the outbreak.
The E. coli outbreak has sickened 104 people in 14 states, federal health officials said in an update on Wednesday.
At least 34 people have been hospitalized, and four developed hemolytic uremic syndrome (HUS), a serious condition that can cause kidney failure. An 88-year-old man who resided in Grand Junction, Colorado, died, as previously reported. The illnesses began at the end of September, and the most recent onset of illness occurred as of Oct. 21, according to the U.S. Food and Drug Administration.
The Food and Drug Administration has said that “there does not appear to be a continued food safety concern related to this outbreak at McDonald’s restaurants.”
However, the outbreak hurt the company’s sales.
Quarter Pounders were removed from menus in several states in the early days of the outbreak.
In a statement Wednesday obtained by CBS News, McDonald’s said it had found an “alternate supplier” for the approximately 900 restaurants that had temporarily stopped serving Quarter Pounders with slivered onions.
“Over the past week, these restaurants resumed the sale of Quarter Pounder burgers with slivered onions,” McDonald’s said.
CBS News reached out to McDonald’s on Saturday for a statement regarding the reported investment.
Health officials said Saturday they have confirmed the first U.S. case of a new form of mpox that was first seen in eastern Congo.
The person had traveled to eastern Africa and was treated in Northern California upon return, according to the California Department of Public Health. Symptoms are improving and the risk to the public is low.
Mpox is a rare disease caused by infection with a virus that’s in the same family as the one that causes smallpox. It is endemic in parts of Africa, where people have been infected through bites from rodents or small animals.
Earlier this year, scientists reported the emergence of a new form of mpox in Africa that was spread through close contact including through sex.
More than 3,100 confirmed cases have been reported just since late September, according to the World Health Organization. The vast majority of them have been in three African countries – Burundi, Uganda, and the Democratic Republic of the Congo.
Since then, cases of travelers with the new mpox form have been reported in Germany, India, Kenya, Sweden, Thailand, Zimbabwe, and the United Kingdom.
Health officials earlier this month said the situation in Congo appears to be stabilizing. The Africa Centers for Disease Control and Prevention has estimated Congo needs at least 3 million mpox vaccines to stop the spread, and another 7 million vaccines for the rest of Africa.
The current outbreak is different from the 2022 global outbreak of mpox where gay and bisexual men made up the vast majority of cases.
