Health
Mother frantic to save clinical trial that could cure her daughter: ‘The treatment is sitting in a fridge'
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.
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 (pictured at right and with her family at left). (Rebekah Lockard)
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.
“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.”
A look back at the medical miracles of 2025
Fox News senior medical analyst Dr. Marc Siegel joins ‘Fox & Friends’ to highlight 2025 breakthroughs, from a pineapple-derived burn cream to a newly approved heart procedure.
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America has been at the forefront of medical innovation since the nation’s founding in 1776.
From groundbreaking surgeries to cancer breakthroughs, U.S. physicians have helped transform nearly every field of medicine.
As America marks its 250th anniversary, experts are highlighting some of the most influential medical innovations in the nation’s history.
No. 1: Orthopedic care
John Uribe, MD, orthopedic surgeon and system chief executive at Baptist Health Orthopedic Care in Florida, said he believes the greatest breakthrough in orthopedics is the evolution of joint replacement surgery, particularly of the hip and knee.
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“A generation ago, severe arthritis or joint damage often meant a lifetime of pain, limited mobility and loss of independence,” he told Fox News Digital.
“Today, orthopedic surgeons can replace a damaged joint with highly durable implants, use advanced imaging and navigation, and increasingly rely on robotic-assisted technology to personalize implant positioning and improve precision.”
“The future of orthopedics will be less one-size-fits-all and more focused on matching the right procedure, implant, recovery plan and technology to the individual patient,” a doctor said. (iStock)
Today, patients can walk the same day after joint replacement, return home sooner and recover with less disruption than in the past, according to Uribe.
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“Hip and knee replacements, arthroscopic procedures, advanced fracture care and spine treatments have allowed patients to stay active longer and maintain independence as they age,” the doctor said. “The biggest impact is that orthopedic care can give people back parts of their lives they thought they had lost.”
“For many patients, the goal is no longer just to relieve pain; it is to restore movement, independence and quality of life.”
No. 2: Mental health treatment
For most of America’s 250 years, mental illness was largely treated indirectly with medication, or not at all when medication was ineffective, according to Dr. Russ Voltin, a West Virginia-based practicing psychiatrist and medical consultant at BrainsWay.
The biggest breakthrough, Voltin told Fox News Digital, has been neuromodulation therapies like deep transcranial magnetic stimulation (TMS), which are “clinically proven to non-invasively target the brain circuits involved in conditions such as depression and OCD, helping rebalance neural activity at its source.”
“Mental health is brain health, and for the first time, we have treatments designed to address it that way.”
For most of America’s 250 years, mental illness was largely treated indirectly with medication, or not at all when medication was ineffective. (iStock)
A generation ago, a patient who didn’t respond to medication had very limited options, he said.
“Today, a clinician can offer noninvasive brain stimulation in an outpatient chair – no anesthesia, no sedation, none of the prominent side effects of medication, and all with limited lifestyle interruption.”
The FDA recently expanded clearance for an accelerated Deep TMS protocol that shortens the initial phase of depression treatment from about four weeks of daily visits to just six treatment days.
“Mental health is brain health, and for the first time, we have treatments designed to address it that way.”
“For someone in a depressive crisis, this is the difference between waiting and getting better,” the expert said.
In clinical trials, roughly 78% of patients reached remission and more than 80% were still in remission a full year later.
“The biggest shift is that for people who once cycled through medication after medication with no relief, durable recovery is now a realistic goal rather than a hope.” (iStock)
“As a clinician, that last figure is the one that matters most: People going back to work, repairing relationships and re-entering their own lives, not just scoring better on a questionnaire,” Voltin said.
“The biggest shift is that for people who once cycled through medication after medication with no relief, durable recovery is now a realistic goal rather than a hope.”
No. 3: Cancer care
Cancer care has advanced dramatically over the past 250 years, with breakthroughs in prevention, screening, diagnosis and treatment transforming patient outcomes.
Leonard Kalman, MD, acting system chief executive at Baptist Health Cancer Care and acting executive medical director at Baptist Health Herbert Wertheim Cancer Institute in South Florida, said one of the most important breakthroughs in oncology is the understanding that “at its core,” cancer is a genetic disease.
Today, physicians can cure certain leukemias and lymphomas that were “once far more difficult to treat,” an expert noted. (iStock)
“Cancer can be driven by inherited germline mutations or by somatic mutations that occur in normal tissue and lead cells to become malignant,” he told Fox News Digital. “That discovery has transformed how we understand, diagnose and treat cancer.”
Today, physicians can cure certain leukemias and lymphomas that were “once far more difficult to treat,” the doctor noted.
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“We can also extend life while preserving quality of life for many patients with metastatic cancers — including diseases such as lung cancer, melanoma and prostate cancer, where treatment options were much more limited a generation ago,” Kalman said.
Many of those advances have shifted cancer care toward more individualized treatment, allowing physicians to tailor therapies based on a patient’s specific disease.
“For many patients, the goal is no longer just to relieve pain; it is to restore movement, independence and quality of life.”
“Advances in targeted therapies, immunotherapy, molecular testing and supportive care allow physicians to better personalize treatment, manage side effects and help patients live longer with a better quality of life, even when cancer has spread beyond the primary tumor,” the doctor said.
No. 4: Cardiovascular care
Tom Nguyen, MD, system chief executive at Baptist Health Heart & Vascular Care and chief medical executive at Baptist Health Miami Cardiac & Vascular Institute in South Florida, highlighted the ability to diagnose heart disease earlier and treat “even the most complex conditions” with safer, more precise and less invasive therapies.
“Cardiovascular disease remains the leading cause of death worldwide, but patients who once might have died in their 40s or 50s are now routinely living into their 80s and 90s with an excellent quality of life,” he told Fox News Digital.
Although cardiovascular disease is the leading cause of death worldwide, patients who once might have died in their 40s or 50s are now “routinely living into their 80s and 90s with an excellent quality of life,” the doctor said. (iStock)
Procedures like open-heart surgery, coronary artery bypass surgery, coronary stents, catheter-based valve replacement, advanced imaging and robotic heart surgery have “completely transformed what is possible,” according to Nguyen.
“Robotic heart surgery is a powerful example of how far the field has come,” he said. “For appropriately selected patients, surgeons can now perform highly complex heart procedures through much smaller incisions using robotic technology that provides exceptional visualization, precision and control.”
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The biggest achievement, Nguyen said, is not only helping people live longer, but also helping them “live better.”
“Today, heart and vascular specialists can perform procedures that would have seemed almost unimaginable just one generation ago,” he said. “Patients are surviving heart attacks, valve disease, rhythm disorders and complex vascular conditions at rates that would have been difficult to imagine decades ago.”
“Many complex cardiac operations that once required opening the chest can now be performed through small incisions, or robotically – allowing patients to recover much faster with less pain and disruption to their lives,” a doctor said. (iStock)
Success isn’t measured only by survival, Nguyen added. “Our ultimate goal is to help patients feel better and return to the lives they enjoy.”
No. 5: Neurology
Michael McDermott, MD, system chief executive of Baptist Health Brain & Spine Care and chief medical executive at Baptist Health Miami Neuroscience Institute, said the ability to safely operate on the brain is the greatest advancement in American neuroscience.
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“Less than a century ago, a craniotomy was an extraordinarily risky operation, and survival itself was far from guaranteed,” he told Fox News Digital. “Today, advances in anesthesia, electrocautery, imaging, surgical navigation, brain mapping and intraoperative neurophysiologic monitoring have transformed brain surgery into a highly precise and much safer procedure.”
The ability to treat acute stroke in real time has been “equally transformative,” McDermott noted.
The growth of artificial intelligence is “beginning to transform spine surgery,” a neurologist said, by helping physicians identify which patients are “most likely to benefit from complex corrective procedures and by allowing implants to be precisely modeled before surgery.” (iStock)
“Using advanced imaging and mechanical thrombectomy, physicians can now remove a clot from the brain and restore blood flow before permanent damage occurs in many eligible patients,” he said. “At the same time, innovations such as high-intensity focused ultrasound for essential tremor demonstrate how neuroscience has become increasingly precise and less invasive.”
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Today, neuro experts can accomplish tasks that “would have been difficult to imagine just one generation ago,” McDermott noted.
“We can remove blood clots from the brain during an active stroke, implant deep brain stimulation devices for Parkinson’s disease, and perform highly sophisticated brain and spine surgery using advanced imaging, navigation and artificial intelligence,” he said.
Medical advancements have improved quality of life in patients with brain tumors and spinal complications. (iStock)
Advances like image-guided surgery, intra-operative brain mapping, neurophysiologic monitoring and radio-surgery allow surgeons to remove tumors more safely while protecting areas of the brain responsible for movement, speech and other critical functions, he said.
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Beyond brain tumors, other advances across neuroscience, like corrective spine surgery, have allowed doctors to restore posture and mobility in patients with severe spinal deformities. Meanwhile, focused ultrasound can “significantly reduce tremors that interfere with everyday activities such as writing, eating or drinking,” McDermott noted.
“Increasingly, our goal isn’t simply to help patients survive – we’re helping them maintain their independence, preserve function and return to the lives they want to live.”
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Health
West Nile virus detected in southern state as health officials warn residents about mosquitoes
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Health officials in Nashville are urging residents to protect themselves from mosquito bites after West Nile virus was detected in mosquitoes for the first time this year.
The Metro Public Health Department (MPHD) announced the virus was found in a mosquito pool collected near Cass Street in North Nashville, marking the city’s first detection of West Nile virus in 2026 and the earliest positive mosquito sample of the season.
The detection comes after health officials reported elevated West Nile virus activity in mosquito pools during 2025, when one human case of the virus was confirmed.
“We can all play a role in reducing the presence of mosquitoes in our community, making our outdoor areas both more pleasant and safer from mosquito-borne diseases like West Nile virus,” Dr. Sanmi Areola, director of health at the Metro Public Health Department, said in a statement to Fox 17.
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A close-up shows mosquitoes feeding in Tehatta, India, on May 1, 2026. Health officials in Nashville recently detected West Nile virus in a mosquito pool, prompting residents to take precautions against mosquito bites. (Soumyabrata Roy/NurPhoto via Getty Images)
“As our team educates those in the area where West Nile virus was found, we hope the rest of our community does what they can to protect themselves and their families from mosquitoes this summer.”
According to the Centers for Disease Control and Prevention, West Nile virus is the leading mosquito-borne disease in the United States. Most people infected with the virus do not develop symptoms, but about one in five experience fever, headaches, body aches, vomiting, diarrhea or a rash. Fewer than 1% develop a serious neurological illness that can affect the brain or spinal cord, with older adults and people with weakened immune systems facing the greatest risk.
Public health officials routinely trap and test mosquitoes throughout the summer to monitor for West Nile virus activity. A positive mosquito sample does not necessarily mean people in the area will become infected, but it serves as an early warning that the virus is circulating locally.
In response to the positive test, MPHD said crews are distributing educational flyers in the affected neighborhood, increasing mosquito trapping, monitoring standing water and applying larvicide where needed to help reduce mosquito populations. The department said it does not spray insecticide to kill adult mosquitoes.
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The Aedes mosquito is a known vector for several viruses, including West Nile virus, yellow fever virus, dengue virus, chikungunya virus, and Zika virus. (Soumyabrata Roy/NurPhoto via Getty Images)
Residents can also request a free backyard inspection from the department’s Pest Management team to identify areas where mosquitoes may be breeding.
Health officials recommend eliminating standing water from bird baths, flowerpots, buckets, old tires, children’s toys and other outdoor containers where mosquitoes lay eggs. Trimming overgrown vegetation around homes can also help reduce mosquito activity.
A field sample of mosquitoes that could carry West Nile Virus is seen at offices of the Riverside County Department of Environmental Health on April 26, 2007, in Hemet, California. (David McNew/Getty Images)
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To help prevent mosquito bites, the health department recommends using EPA-approved insect repellents containing DEET, picaridin or oil of lemon eucalyptus, wearing long sleeves and pants outdoors during peak mosquito hours around dusk and dawn, and making sure window and door screens are in good repair.
Officials said reducing mosquito breeding around homes can help lower the risk of West Nile virus and other mosquito-borne illnesses throughout the community.
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