A rare, fatal disease called SPG50 affects fewer than 100 people in the world — and one of them is Naomi Lockard, a 3-year-old in Colorado.

An experimental genetic therapy has shown promise in stopping the disease’s progression — but it is far too expensive for most families to afford.

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 a child’s development, gradually leading to cognitive impairment, muscle weakness, speech impairment and paralysis, according to the National Organization for Rare Disorders.

Most people with the disease will die by the time they reach their 20s.

When Naomi Lockard was born in 2017, her parents immediately noticed some developmental delays.

By around six months, when she still “wasn’t really moving,” Lockard said, they started the baby in physical therapy, which didn’t help.

Eventually, an MRI and full genetic testing panel 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 condition is genetic.

“My husband and I each have one healthy copy of this gene, but we each have one mutated copy,” she told Fox News Digital in a phone interview. 

“Naomi got both mutated copies, and there was a 25% chance that Jack would also get both mutated copies,” Lockard, pictured with her family, told Fox News Digital. (Rebekah Lockard)

“Naomi got both mutated copies, and there was a 25% chance that Jack (the second baby) would also get both mutated copies.”

“It was a lot of panic at first, a lot of tears, because it’s a horrible condition,” 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 strive and adapt,” Dr. Eve Elizabeth Penney, an epidemiologist at the Texas Department of State Health Services and medical contributor for Drugwatch, told Fox News Digital. 

Fewer than 100 people in the world are known to have SPG50.

“Over time, these symptoms can worsen, making it hard for affected individuals to walk and perform daily activities,” added Penney, who was not involved in the Lockard children’s care.

“The prognosis varies from person to person, but it’s generally a progressive condition, meaning symptoms can become more severe over time.”

A glimmer of hope

There is currently no FDA-approved treatment for SPG50, but the Lockards found hope when they enrolled in a clinical trial for an experimental gene therapy that was started by another parent, Terry Pirovolakis.

“It’s kind of like a transplant for genes,” Lockard told Fox News Digital. “It functions like a treatment, or maybe even a cure.”

The procedure, which involves injecting cerebral spinal fluid through a lumbar puncture, does come with risks.

Naomi Lockard, left, just turned 3 years old. She has not received the gene therapy. Jack Lockard, right, was treated at 6 months old. (Rebekah Lockard)

“But it’s worth the risk, because it’s the only thing that could possibly help prevent the condition from getting worse,” Lockard said.

Her newly diagnosed baby — who was just shy of six months old — received the gene therapy treatment first, as there was a better chance of stopping the disease at a younger age.

He was the youngest child ever to receive an intrathecal (spinal) gene therapy treatment.

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“Jack has thrived since then,” Lockard said. “He is sitting independently, banging toys together, drinking from a straw cup, and working really hard on crawling.”

She added, “Doctors and therapists share the same sentiment: The treatment works!”

Other children who participated in the trial have experienced similar results, Lockard said.

“They’ve all shown that their disease has stopped progressing and their cognition has improved,” she said.

“Naomi just turned 3, and she only learned to crawl about six months ago. She can’t walk or talk, and her cognitive level is probably that of a 9-month-old,” her mother told Fox News Digital. (Rebekah Lockard)

Lockard’s daughter, Naomi, has not yet received the therapy.

“We can’t help but compare Jack and Naomi, and we see how he’s meeting these milestones. He’s caught up to her developmentally, and he’ll probably surpass her within the next few months, even though they’re two years apart,” Lockard said.

“Naomi just turned 3, and she only learned to crawl about six months ago. She can’t walk or talk, and her cognitive level is probably that of a 9-month-old.”

“Kids develop paralysis in elementary school, become quadriplegic in high school and pass away in their 20s.”

Although her daughter will likely always have deficiencies, as she’s missed the “critical window” of development, the gene therapy could still stop further progression.

“If they can treat her before she gets the paralysis, the hope is that she’ll never develop that,” Lockard said.

If her daughter doesn’t receive the therapy, she will likely experience the typical trajectory of the disease, Lockard said.

“We can’t help but compare Jack and Naomi, and we see how he’s meeting these milestones,” said Lockard. “He’s caught up to her developmentally, and he’ll probably surpass her within the next few months, even though they’re two years apart.” (Rebekah Lockard)

“Kids develop paralysis in elementary school, become quadriplegic in high school and pass away in their 20s — never learning to talk, and losing any ability to move over the course of their short lives.”

The problem is that the clinical trial has run out of funding.

Cost and complexity

Dr. Penney noted that treatment for SPG50 is challenging and expensive to develop — “mainly because it’s a sporadic disease.”

The doctor told Fox News Digital, “Pharmaceutical companies often prioritize conditions that affect larger populations, with a more significant potential for recouping research and development costs.”

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“The market is much smaller for rare diseases like SPG50, making it financially less viable for companies to invest in creating a treatment.”

Developing treatments for genetic disorders requires significant research, time and specialized technology, Penney added, all of which add to the cost and complexity.

Terry Pirovolakis, pictured with his family, used his life savings to create a genetic therapy for his youngest son, center, who has SPG50. (Terry Pirovolakis)

In the absence of a cure, most families can only manage symptoms through physical therapy, occupational therapy, speech therapy and medications to help control spasticity or seizures, Penney said. 

“Managing SPG50 requires a comprehensive, multidisciplinary approach to address its various symptoms and challenges,” Penney said.

Fighting to keep hope alive

The experimental trial that potentially saved Jack Lockard’s life was started by another parent, Terry Pirovolakis.

Pirovolakis, based in Canada, found out in 2017 that his youngest son, Michael, had SPG50.

“They told us he would be paralyzed from the waist down by the age of 10, and a quadriplegic by the age of 20,” Pirovolakis told Fox News Digital in an interview. “They said he would need support for the rest of his life.”

Pirovolakis’ two older children, pictured with their little brother, Michael (bottom left), do not have the disease. (Terry Pirovolakis)

Pirovolakis refused to accept that. He immediately started doing research and traveling around the world to gene therapy conferences, speaking with medical experts about his son’s disease.

Eventually, he liquidated his life savings, refinanced his home and paid a team of scientists at the University of Texas Southwester Medical Center to create a “proof of concept” for a genetic treatment for his son.

“I couldn’t just let these kids die. I had to do something.”

After seeing positive results in mice studies, as well as in cells from his son and a few other children with SPG50, Pirovolakis partnered with a small company in Spain to manufacture the drug. 

In Dec. 2021, Health Canada granted Pirovolakis permission to move forward with the gene therapy for his son.

In Dec. 2021, Health Canada granted Pirovolakis permission to move forward with the gene therapy for his son, Michael (above), who has shown positive results. (Terry Pirovolakis)

“After that, we had three more doses, and we decided that we had to help other kids,” Pirovolakis said.

“I couldn’t just let these kids die. I had to do something.”

He opened a Phase 2 study in the U.S., in which three more children with SPG50 were treated — including Jack Lockard.

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“I tried to give the therapy to pharmaceutical companies, but no one wanted to make it, so I quit my job and started a nonprofit, CureSPG50, in California,” Pirovolakis said.

“We now have five employees and 20 consultants, and our goal is to save kids with five diseases, almost all of them fatal.”

Next, Pirovolakis will start a Phase 3 study at the National Institute of Health for SPG50, with future trials planned for other diseases.

“Doctors are ready. There just isn’t enough money to make it happen.”

The problem is that without the backing of major drug companies, there isn’t funding available to dose the therapies to the children who need it.

“They have eight doses that were produced in Spain and have been flown to the U.S.,” Lockard said. 

“It’s here, just literally sitting in a refrigerator, ready to go. Doctors are ready. There just isn’t enough money to make it happen.”

Young Michael Pirovolakis is pictured with his mother, Georgia Pirovolakis. (Terry Pirovolakis)

It costs about $1 million to make the drug for each child, Pirovolakis said, and another $300,000 or so to treat each patient in the U.S. at the hospital. 

While Pirovolakis and his team are actively working to secure grants and investors, it’s largely up to the parents to raise funds for the next phase of the clinical trial.

So far, Lockard has raised $50,000 via a GoFundMe fundraiser, but that is only a fraction of what is needed to get her daughter treated.

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“Right now, there are four families in the U.S. who are trying really hard to fundraise the money that’s needed, because time is of the essence,” he said.

“We want to make sure the trial moves on and these kids get treated.”

The end goal

Looking ahead to the Phase 3 clinical trial at the NIH, Pirovolakis’ goal is to treat eight children with SPG50.

“If we can show that it works in all eight children — and we can prove to the FDA that it is making a difference — then the drug will get approved and every child can get it,” he said.

“I get calls at least five times a week from families around the world, asking to help me save their kids.”

Ideally, after the drug is approved — which could take three to five years, Pirovolakis estimates — SPG50 will be added to hospitals’ newborn screening programs and every child with the disease will be able to get the therapy.

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“I get calls at least five times a week from families around the world, asking to help me save their kids,” he said.

“It’s tough — there’s only so much you can do, and unfortunately, this is a money problem. It’s just heartbreaking.”

Obesity has often been described as a “gateway disease” leading to other conditions — and one of those is COVID-19, according to a new study from Brigham and Women’s Hospital and Harvard Medical School.

Patients with obesity were found to have a 34% higher risk of contracting SARS-CoV-2 compared to non-obese people, researchers found.

The study analyzed over 72,000 patients from Brigham and Women’s Hospital in Boston, all of whom had either been exposed to COVID or tested positive for the virus between March 2020 and Jan. 2021, according to a press release. 

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The findings were published in PNAS Nexus on Tuesday.

For adults, obesity is defined as a body mass index (BMI) of 30 or greater, aligned with the World Health Organization (WHO)’s guidelines.

For children, the obesity guideline was a growth curve above the 95th percentile, per the criteria from the American Academy of Pediatrics (AAP).

Obesity rates among younger people are expected to approach 50% by 2030, according to the researchers.

“Obesity is not only a risk factor for worsened outcomes, but also increases the risk for infection upon exposure,” the researchers wrote in the study findings. 

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“Identifying such populations early will be crucial for curbing the spread of this infectious disease.”

The results of the study were not surprising to medical experts, including Dr. Rekha Kumar, chief medical officer of Found, a telehealth weight care provider.

“Obesity is not only a risk factor for worsened outcomes, but also increases the risk for infection upon exposure,” the researchers wrote. (iStock)

“We’ve known for some time that obesity is associated with increased severity of COVID-19, including higher risks of hospitalization, ICU admission and death,” Kumar, who was not involved in the research, told Fox News Digital. She is also a practicing endocrinologist in New York City at NewYork-Presbyterian.

“This study extends our understanding by suggesting that obesity also increases the risk of initial infection.”

“Whenever you have an increased inflammatory process in the body, it greatly affects the immune system.”

Walter Gaman, M.D., of Executive Medicine of Texas, was not involved in the study, but also noted that the connection between obesity and COVID is “no surprise.”

“We know that obesity is associated with inflammation and chronic diseases,” he told Fox News Digital. 

“Whenever you have an increased inflammatory process in the body, it greatly affects the immune system,” he went on. “This is congruent with the findings of the study.”

“There is an indisputable relationship between obesity and the immune system, chronic disease and early death,” a doctor said. (iStock)

Underweight individuals were also at great risk at the height of the pandemic, Gaman pointed out. 

“It would be interesting to see a study that addresses both overweight and underweight correlations to COVID,” he added.

Why does obesity increase COVID risk?

There are several potential reasons for the link, according to Kumar, ranging from impaired immune function to coexisting conditions. 

Obesity rates among younger people are expected to approach 50% by 2030, according to the researchers. (Getty Images)

“Obesity is associated with chronic low-grade inflammation and alterations in immune responses, which can compromise the body’s ability to fight off infections effectively,” she said.

“Additionally, obesity is often associated with other coexisting conditions, including diabetes and hypertension, which are themselves risk factors for COVID-19.”

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Based on the findings, Gaman recommended that people obtain and maintain a healthy weight — not just for cosmetic reasons, but to improve their health.

“There is an indisputable relationship between obesity and the immune system, chronic disease and early death,” he confirmed.

A doctor recommends that people with obesity continue to take extra precautions to avoid COVID-19 exposure — and that they speak with a medical provider if they need more specific guidance. (iStock)

“Regular exercise and a healthy diet are the first lines of defense when it comes to strengthening the immune system.”

Kumar recommends that people with obesity continue to take extra precautions to avoid COVID-19 exposure — and that they speak with a medical provider if they need more specific guidance. 

Potential limitations

The researchers acknowledged several limitations of the study, primarily that it relied on people self-reporting their exposure to the virus.

Also, all patients are from the Mass General Brigham health care network, which means they may not be representative of a wider population.

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The researchers also used data from patients’ electronic health records, which are subject to errors.

“It’s a case-control study, which can show associations but not prove causation,” Kumar added.

Obesity is often associated with other coexisting conditions, including diabetes and hypertension. (iStock)

Another potential limitation is that the study relied on BMI as the sole measure of obesity, she noted, which doesn’t account for body composition or fat distribution.

“BMI can be a helpful measure for some things, but it’s not comprehensive,” she said.

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There may also be underlying factors impacting COVID risk that were not considered, such as socioeconomic status or health care access, according to Kumar.

“I’d like to see this (and any) research replicated to include a broader audience to ensure that it’s as accurate and inclusive as possible,” she said.

Facing anxiety head-on and approaching it differently can enhance your life.

That’s according to David H. Rosmarin, PhD, a psychologist and associate professor at Harvard Medical School, who delivers the advice in his new book, “Thriving with Anxiety: 9 Tools to Make Your Anxiety Work for You.”

Rosmarin shared with Fox News Digital that overcoming his own journey with anxiety allowed him to better help others.

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In “Thriving with Anxiety,” he writes that he unexpectedly found himself suffering from the disorder as he set up an anxiety clinic in New York City in 2011. 

He had already established a name for himself in Boston, but was struggling to get patient referrals in New York while facing mounting expenses and a tough commute between the two cities.

Rosmarin writes, “A wave of anxiety swept over me. This was followed quickly by a sense of self-criticism for being hypocritical, followed by a surge of catastrophic thinking.” 

He describes feeling embarrassed and “headed for failure” — wondering how he could help people overcome their anxiety when he was suffering from it himself. 

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“Judging yourself for feeling anxious is like beating someone up when they are on the floor in order to get them to stand,” he said. 

But he found a way to become more conscientious about making healthy lifestyle choices – eating more nutritious foods, exercising more frequently, and opening up to others about his challenges.

Hidden benefits of anxiety

People who have anxiety are often conscientious and driven, which can help prime them for leadership roles, the book notes.

Having anxiety can also lead to greater understanding and self-acceptance, according to Rosamarin.

Rosmarin is shown speaking at the Center for Anxiety’s fall retreat in New York on Oct. 18, 2023. (The Center for Anxiety)

Anxiety can also lead to empathy, he told Fox News Digital.

“When someone has been through the depths of difficulty, they can see the struggle on another person’s face,” Rosmarin said. 

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“They understand what it means to feel uncomfortable, and it can create that compassion.”

Anxiety is not a malady, he said, but “a normal human emotion that we all experience, and we can use it to improve our inner strength, our relationships with others and our spiritual lives.”

5 tips for managing anxiety

Rosmarin offered the following tips for making the most of anxiety.

1. Lean into it

Instead of trying to avoid anxiety, the key is to face or even embrace it, he said.

“We can criticize ourselves for feeling anxious, get upset about it, run away from it … or we can lean into it,” Rosmarin said.

This requires a “healthy dose of self-compassion,” he said — and a recognition that part of being human is feeling overwhelmed at times.

Rosmarin speaks at the Center for Anxiety’s fall retreat in New York on Oct. 18, 2023. “We can criticize ourselves for feeling anxious, get upset about it, run away from it … or we can lean into it,” he said.  (The Center for Anxiety)

2. Practice positive self-talk

Rosmarin suggests in his book that people speak kindly to themselves, allow time away from upsetting situations, and avoid self-deprecating language. 

“There are ways to build your physical strength and there are ways to build your emotional fortitude.”

When he changed his inner dialogue to speak more gently to himself, he became more self-aware and found the self-acceptance he needed to forge ahead, he writes.

3. Try exposure therapy

Exposure therapy, a mental health practice in which people face their fears, can also help them withstand adversity rather than let it control them, the psychologist said.

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For example, if you are afraid of public speaking, Rosmarin recommends building resilience by raising your hand at a meeting, wearing something that draws attention to yourself, or even singing karaoke. 

The psychologist, shown in inset, details how facing anxiety head-on and approaching it differently can enhance your life.  (iStock; Anthony Randazza/The Center for Anxiety)

“You don’t have to do this, but you also don’t have to go to the gym and work out,” he said.

“There are ways to build your physical strength and there are ways to build your emotional fortitude.”

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The goal of this practice is to get to the point where you don’t care anymore if you are anxious — and even though it’s uncomfortable, it’s not going to stop you, he said.

4. Share your fears

The next step is to share your fears with someone, if possible, and reassure yourself that the anxiety won’t last forever, Rosmarin told Fox News Digital. 

“Embrace it … let it ride and let yourself feel the feelings,” he advised.

The expert suggests that people speak kindly, give themselves time away from upsetting situations and avoid self-deprecating language.  (iStock)

5. Seek calm

The last step, which Rosmarin said is the most important, is to let go. 

The psychologist mentioned that humans have a “built-in cooling system” called the “rest and digest” system — which helps the body calm down. 

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“We’re human beings, and we don’t have control over everything,” he noted. 

“The more we accept that, the more serenity we can have.”

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Rosmarin’s Center for Anxiety now operates clinics in three states, treating nearly 1,500 patients each year, he told Fox News Digital.

“Thriving with Anxiety: 9 Tools to Make Your Anxiety Work for You” is published by Harper Horizon. 

The Centers for Disease Control and Prevention (CDC) on Tuesday reported 21 cases of Oropouche virus disease, also known as sloth fever, in travelers returning from Cuba.

Twenty cases have been reported in Florida and one in New York.

The disease is spread primarily through bites from midges and from some mosquitoes. Symptoms of the disease include headache, fever and muscle aches and joint pains, but the virus is rarely fatal. 

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There is no indication that the virus is spreading in the U.S. but health officials are warning doctors to be on the lookout for infection in travelers coming from Cuba and South America.

Most patients returning from Cuba reported their symptoms between May and July.

Overall, three patients were hospitalized, and no deaths were reported, the CDC said in its Morbidity and Mortality Weekly Report.

A dire economic crisis in Cuba has made it difficult to control the spread of Oropouche. Frequent power outages mean many sleep with windows open during the hot Caribbean summer. Few Cubans have access to insect repellents, and fumigation efforts have been stymied by fuel shortages.

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The health body on Tuesday reported 21 cases of Oropouche virus disease, also known as sloth fever, in travelers returning from Cuba. (Elijah Nouvelage/Bloomberg via Getty Images)

Earlier this month, the CDC issued a Health Alert Network (HAN) Health Advisory about an increase in Oropouche virus disease in the Americas region. 

The virus is endemic to the Amazon basin and more than 8,000 cases have been reported in Brazil, Bolivia, Peru, Columbia, and Cuba so far this year, including two deaths, and five cases of vertical transmission, where viruses can pass between mother and fetus.

The CDC has recommended that pregnant women avoid non-essential travel to Cuba and suggested all travelers take steps to prevent bug bites, such as using insect repellents and wearing long-sleeved shirts and long pants. Currently, there are no vaccines available for the disease and treatment for symptoms can include rest, fluids and use of analgesics and antipyretics.

People can become infected when visiting these forested areas and getting bitten. They can then introduce the virus to urban areas, where biting midges and certain mosquitoes spread the virus from person to person.

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A baby three-toed sloth holds a teddy bear at a wildlife center in Alajuela, Costa Rica.  (AP Photo/Kent Gilbert)

Approximately 60% of people infected with Oropouche virus become symptomatic, according to the CDC. The incubation period is typically three to 10 days.

It has sometimes been called sloth fever because scientists first investigating the virus found it in a three-toed sloth, and believed sloths were important in its spread between insects and animals. 

The virus was first detected in 1955 in Trinidad and Tobago.

The Associated Press and Reuters contributed to this report.