Health
Family selling dream home to fund life-saving treatment for 5-year-old daughter
A family in Queensland, Australia, is faced with selling their dream home to raise money for their daughter’s life-saving therapy.
Tallulah Moon, 5, has been diagnosed with SPG56, a degenerative brain disease that is caused by a rare gene mutation.
Tallulah was a healthy, happy baby until shortly after her first birthday, when she suddenly began to lose her motor skills.
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“She was hitting all of her milestones, and then suddenly she experienced a really steep regression — her abilities sort of fell like an avalanche off the cliff, and it was terrifying,” Golden Whitrod, Tallulah Moon’s mother, told Fox News Digital during an on-camera interview.
Tallulah Moon (left) has been diagnosed with SPG56, an extremely rare neurodegenerative disease that worsens over time. Her mother, Golden Whitrod (right) is committed to finding and funding the genetic therapy to save her daughter. (Our Moon’s Mission/Golden Whitrod; Sara Climie Photography)
“She went from a little girl who was walking and talking to suddenly not even being able to sit up on her own, not being able to lift her arms above her shoulders or hold up her neck,” Whitrod said.
Swallowing and choking also became a concern.
“We’d gone from watching this beautiful child thrive at 14 months, to regressing to the abilities of a 4-month-old,” Whitrod recalled.
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Tallulah Moon was also terrified, unable to comprehend the loss of her abilities.
“I remember her looking at us as if to say, ‘Why can’t you help me?’” her mother said. “And I could feel that as a parent. I just didn’t know what to do.”
A devastating diagnosis
At first, Whitrod hoped there would be an easy fix for whatever was causing Tallulah’s decline.
After six months of testing and scans, doctors performed a genetic study known as whole genome sequencing (WGS), leading to Tallulah Moon’s diagnosis of SPG56 in August 2020.
Tallulah Moon, then age 3, is pictured at the family’s home in Darwin, Australia, which the family has put up for sale to fund their mission to cure their daughter of SPG56. (Our Moon’s Mission/Golden Whitrod)
SPG56 is a type of hereditary spastic paraplegia (HSP) that usually begins around age 1 or 2 and worsens over time, causing muscle weakness and gradually robbing children of the ability to walk, talk, stand and sit up, as seen in past cases.
In later stages, the disease can cause cognitive decline, seizures and even an inability to swallow.
SPG56 is one of the rarest types of HSP, affecting fewer than one in every million children, statistics show.
“We’d gone from watching this beautiful child thrive at 14 months, to regressing to the abilities of a 4-month-old.”
There is currently no cure for the disease.
“The doctors told us, ‘just love your baby,’” Whitrod said. “They said there was nothing they could do — that there were no treatments.”
A mother’s determination
After “coming out of the fog” post-diagnosis, Whitrod immersed herself in research, making connections with other families whose children were also living with rare genetic diseases.
One of those was Terry Pirovolakis, a Canadian father whose son was diagnosed with SGP50, a disease that is very similar to Tallulah Moon’s SPG56.
Pirovolakis immediately started researching to find a gene therapy that could help his son.
Whitrod (at left) met with scientists at genetic institutes and carefully built her own research team. (Our Moon’s Mission/Golden Whitrod)
After meeting with experts from around the world, he liquidated his life savings and paid a team of researchers to start developing the therapy. In 2022, after massive fundraising efforts, his son received the one-time treatment, which halted progression of the disease.
Following Pirovolakis’ lead, Whitrod met with scientists at genetic institutes and carefully built her own research team.
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Over a three-year period, the team created an experimental gene therapy for SPG56, which Whitrod calls a “massive win.”
The next step is for the therapy to go through clinical trials to make sure it’s safe and effective for the children who need it — but the cost is too high for the vast majority of families to cover.
It will require a staggering $3 million to manufacture the medication before it can be administered to Tallulah Moon in a clinical trial, according to Whitrod.
Chris (left), Finn (top), Golden and Tallulah Moon enjoyed a day at the beach on International Rare Disease Day 2023. (Our Moon’s Mission/Golden Whitrod)
“Unfortunately, the big pharmaceutical companies just aren’t interested in funding the research for these rare diseases, even though the treatments are possible,” she said.
“We realized that we have to fund this on our own if we want to do this.”
Parents Golden and Chris Whitrod with daughter Tallulah Moon, 5, who lives with the neurodegenerative disease SPG56 (Sara Climie Photography)
Walter Gaman, MD, founder of Executive Medicine of Texas, emphasized the financial burden that often comes with rare diseases.
“Rare diseases, by nature, account for a small market share, meaning that there are few customers to absorb the cost of bringing effective drugs to market,” Gaman, who is not affiliated with the Whitrod family, told Fox News Digital.
“We realized that we have to fund this on our own if we want to do this.”
In 2003, Deloitte reported that the average cost of bringing a drug to market exceeded $2 billion, according to Gaman.
“One of the most significant wins for orphan drugs came in 2017, when President Trump signed the Food and Drug Administration Reauthorization Act (FDARA) into law,” he noted.
“This was a huge win for orphan therapies because it expanded the FDA Rare Disease Program and also expedited the review process. As a result, 2018 saw a record 59 orphan drugs greenlighted. We need to build that momentum up once again.”
In 2003, the average cost of bringing a drug to market exceeded $2 billion.
There is still a lot of work to do, he noted.
“We need to bring orphan drugs to market, but we also need to look at ways of making these drugs more affordable to the end user,” Gaman said.
Some potential ideas are to offer tax breaks to companies that champion such drugs, or to have a tax on pharmaceutical companies that goes directly to the FDA Rare Disease Program, he suggested.
A ‘much bigger dream’
“We’re standing at the precipice of there being a treatment for Tallulah and for children in her position,” Whitrod said.
“We feel like we’re almost there. But, of course, $3 million for a little Aussie family is quite a lot.”
The Whitrods have launched a charitable foundation called Genetic Cures for Kids, with a fundraising initiative called Our Moon’s Mission.
The family has raised some funds through donations, but it’s only a fraction of what is needed to treat Tallulah Moon — hence their decision to sell their home.
The house, which is located in the suburb of Stuart Park, is scheduled to go up for auction this week.
Golden Whitrod (left), mother of Tallulah Moon, has built a research team to identify the medication for her daughter’s genetic disorder. (Our Moon’s Mission/Golden Whitrod)
“We’d hoped that some miracle would happen and we wouldn’t need to sell it, and that help would come before we needed to come to this crunch point,” Whitrod said.
“But in the end, we realized that’s our last asset that we have, and that could help us get to the finish line.”
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While they are sacrificing their family’s “dream home,” Whitrod says they are now aspiring to a “much bigger dream.”
“That is to give Tallulah the life she deserves — and we’re all in for that.”
While she is intent on saving her daughter, Whitrod has also set her sights on a wider goal — to help other families whose children are facing similar challenges. (Sara Climie Photography)
Meanwhile, Whitrod said, Tallulah Moon is working to fight the neurodegenerative disease through physiotherapy, occupational therapy and speech therapy.
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While she is intent on saving her daughter, Whitrod has also set her sights on a wider goal — to help other families whose children are facing similar challenges.
Golden Whitrod is pictured with her daughter, Tallulah Moon, a 5-year old living with the rare neurodegenerative disease SPG56. (Sara Climie Photography)
“What we’re creating is not just a treatment for Tallulah that ends with the kids with SPG56 — we’re creating a replicable framework, so the researchers can go on to create treatments for other similar diseases,” she said.
“If we can get there in time, then we can help Tallulah live the life she deserves — and not just her, but also lots of children just like her.”
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Amid warnings of a Legionnaires’ disease outbreak on Manhattan’s Upper East Side, health experts say that early recognition of symptoms can mean the difference between a quick recovery and life-threatening complications, especially for high-risk groups.
New York City health officials are urging anyone who has visited the east side of Central Park or Manhattan’s Upper East Side since late June to watch for symptoms.
As of July 6, the New York City Health Department had confirmed 23 cases and 17 hospitalizations associated with the respiratory infection. No deaths have been reported.
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Officials are investigating contaminated cooling towers as the likely source. They have emphasized that the illness is not spread person-to-person and is not linked to the city’s drinking water.
Health experts say that early recognition of symptoms can mean the difference between a quick recovery and life-threatening complications, especially for high-risk groups. (iStock)
“Legionnaires’ disease is deadly but can be effectively treated if diagnosed early,” said NYC Health Commissioner Dr. Alister Martin in a press release. “New Yorkers at higher risk, including anyone who is 50 and older, those who smoke or people with chronic lung conditions should be especially mindful of their symptoms and seek care as soon as symptoms begin.”
What is Legionnaires’?
Legionnaires’ disease is a type of pneumonia caused by Legionella bacteria.
The bacteria is usually found in lakes, streams and other freshwater environments, but can grow in any area where water sits for a long time, according to the CDC.
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That can include shower heads, sink faucets, hot tubs, water features/fountains, plumbing systems and other water systems.
When people swallow or breathe in droplets of water that contain Legionella, they can potentially become ill.
Although human transmission is possible in rare cases, the disease is not typically transmitted among people, per the Centers for Disease Control and Prevention.
Symptoms of infection
Infections can lead to severe pneumonia in older people and those with compromised immune systems, according to Dr. Andrew Handel, a pediatric infectious diseases expert at Stony Brook Children’s Hospital on Long Island, New York.
Symptoms of Legionnaires’ disease usually show up between two and 14 days after exposure.
New York City health officials are urging anyone who has visited the east side of Central Park or Manhattan’s Upper East Side since late June to watch for symptoms. (iStock)
“Legionella infections cause symptoms that are similar to other forms of pneumonia — fever, coughing, difficulty breathing, shortness of breath and chest pain,” Handel previously told Fox News Digital.
“Legionnaires’ disease is deadly but can be effectively treated if diagnosed early.”
The signs are similar to other types of pneumonia, and include the following:
- Cough
- Fever
- Shortness of breath
- Muscle aches and headaches
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Some patients may also experience nausea, diarrhea and confusion, the CDC noted.
Diagnosis, treatment and prevention
A medical professional can diagnose the infection with laboratory tests and chest X-rays.
The condition is typically treated with antibiotics. In cases of severe infection, hospitalization may be required for breathing support and IV hydration.
Around 10% of people who contract Legionnaires’ disease will die from those complications — and the mortality risk rises to 25% for those who get Legionnaires’ while staying in a healthcare facility, according to the CDC.
The bacteria is usually found in lakes, streams and other freshwater environments, but can grow in any area where water sits for a long time, according to the CDC. (iStock)
“Treatment needs to be early and aggressive,” Dr. Nathan Goodyear, an Arizona-based integrative medicine expert, previously told Fox News Digital. “Legionella infection is an intracellular infection that requires antibiotic treatment.”
Antibiotics that are appropriate for Legionella infection include Levofloxacin and Azithromycin.
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“Therapy can be prescribed orally in healthy individuals… but intravenous antibiotics often prove to be the initial option for treatment secondary to the pathogenicity of the disease,” Goodyear said.
Currently, there are no vaccines for Legionnaires’ disease.
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The best strategy to prevent infection is to reduce the growth and spread of the Legionella bacteria. The CDC recommends that building owners and managers use a water management program to reduce the risk.
“New Yorkers at higher risk, including anyone who is 50 and older, those who smoke or people with chronic lung conditions should be especially mindful of their symptoms and seek care as soon as symptoms begin,” city officials stated. (iStock)
To prevent serious illness from Legionnaires’, Goodyear recommends that all smokers kick the habit, and also emphasizes the need to “aggressively support” chronic pulmonary disease.
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“Increasing immune support (vitamin D3, vitamin C, Zinc) is required to counter the immune dysfunction associated with advancing age.”
Obesity is another foundational risk factor for all chronic inflammatory diseases, the doctor added.
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Journalist Katie Couric is sharing a scary medical episode that she experienced on June 27.
In a post on Substack titled “The Day I’ll Never Remember,” she detailed a sudden episode that left her unable to recall the current month, year and president.
“I thought it was 2024. And I believed Joe Biden was president,” she wrote.
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The event occurred while Couric was attending the Aspen Ideas Festival in Colorado, during which she participated in two public panels — one on AI and one on journalism — both of which she cannot remember at all.
“I have no idea what we talked about, or of what occurred when the panels ended,” she said.
Journalist Katie Couric is sharing a scary medical episode that she experienced on June 27. (Getty Images)
John Molner — Couric’s husband, who was in attendance at the festival and the two panels — also shared his account.
After the event, someone told Molner that Katie wasn’t feeling well. When he reached her, an EMT and a doctor were tending to her. “I could tell something was off,” he wrote. “It could have been altitude sickness, but Katie was definitely not all there.”
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At the hospital, when Couric struggled to recall the year, the president and her grandchildren’s names, doctors began checking for a stroke.
An MRI revealed no signs of stroke, which was a relief, but “Katie’s ‘fog’ became a lot more apparent,” Molner wrote.
John Molner, Couric’s husband, who was in attendance at the festival and the two panels, also shared his account. (Getty Images)
“She repeatedly asked me the same questions: ‘What was I doing before we got to the hospital?’ ‘Why am I at the hospital?’”
Couric was ultimately diagnosed with transient global amnesia, a sudden, temporary episode of memory loss that prevents a person from forming new memories and may also erase some recent memories, according to Mayo Clinic.
“The cause seems to be as mysterious as the brain itself.”
It is not caused by a stroke, seizure or head injury, and it usually resolves completely within 24 hours.
“[It’s] just a very weird neural episode that’s pretty uncommon and, at least in most cases, is a ‘one and done’ experience,” Molner said.
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Couric said she finally began feeling “like herself” again around 9 p.m. and went to sleep at 2 a.m.
As TGA leaves a “permanent gap in memory” for the duration of the episode and for hours beforehand, Couric said that from around noon on that day until at least 7 p.m. will remain a “big, black hole.”
As TGA leaves a “permanent gap in memory” for the duration of the episode and for hours beforehand, Couric said that from around noon on that day until at least 7 p.m. will remain a “big, black hole.” (Getty Images)
Data shows that approximately three to eight people per 100,000 will have an episode of transient global amnesia, with people 50 years of age and older at higher risk.
The specific cause of TGA is not known, but some experts believe it stems from a “temporary dysfunction in the brain’s hippocampus — the area responsible for creating new memories,” Couric shared.
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“Doctors believe this is driven by brief interruptions in blood or oxygen flow, or microscopic spasm in the blood vessels.”
Episodes could potentially be triggered by intense physical exertion, emotional distress, extreme temperature changes or migraines, experts say.
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Approximately 15% of patients will have a recurrence 10 years later.
“Why did this happen to me? Was the altitude an issue? Was I dehydrated? Tired? Stressed? The literature doesn’t seem to indicate that these are contributing factors, but the cause seems to be as mysterious as the brain itself,” Couric wrote.
Anyone who experiences sudden memory loss, confusion, difficulty speaking, weakness, numbness, vision changes, severe headache or other stroke-like symptoms should seek immediate medical attention or call 911, doctors advise. (iStock)
“All I know is that those hours will be forever lost. Someone described it as my brain failing to hit the ‘record button.’”
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“While this was a freaky occurrence, it could have been much more serious. So ultimately, I’m relieved — even though several hours of a Saturday in June will always be missing for me.”
Anyone who experiences sudden memory loss, confusion, difficulty speaking, weakness, numbness, vision changes, severe headache or other stroke-like symptoms should seek immediate medical attention or call 911, doctors advise.
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Older adults identified as “super movers” are about half as likely to develop cognitive impairment than their peers.
That’s according to a recent study led by Stony Brook Medicine in New York, which evaluated the cognitive function of 4,000 adults 80 and over who participated in multiple aging and longevity studies over several years.
Among this group, 6% to 10% were classified as super movers, which means they walk at a much faster pace than others of the same age and gender — at speeds comparable to people three decades younger.
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The super movers were found to have about half the risk of cognitive decline compared to seniors with typical gait speed.
The findings were published in the journal Neurology on June 16.
Older adults identified as “super movers” are about half as likely to develop cognitive impairment than their peers. (iStock)
“The study reinforces that mobility and brain health are closely connected,” lead study author Dr. Joe Verghese, MD, neurologist at Stony Brook Medicine, told Fox News Digital. “This suggests that preserving mobility may be an important marker of healthy brain aging and resilience.”
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The most intriguing finding, according to Verghese, was that super movers maintained cognitive function despite having similar dementia-related brain changes as their peers.
In postmortem brain analysis, there was no difference in dementia-related pathologies between the super movers and the slower walkers, the study stated.
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“This suggests they may possess resilience mechanisms that help preserve brain function even in the presence of age-related changes,” he said. “Understanding these resilience factors could lead to new strategies for promoting healthy brain aging.”
As the study was observational, there were some limitations, and it does not prove that walking faster prevents dementia, the researchers noted.
Super movers were found to have about half the risk of cognitive decline compared to seniors with typical gait speed. (iStock)
“Other factors, such as cardiovascular health, physical fitness or genetics, may also contribute to both faster walking and better cognitive outcomes,” Verghese said.
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This study adds to growing evidence that what’s good for the heart and muscles also benefits the brain, he noted, adding that “staying physically active remains one of the most effective, evidence-based ways to support healthy aging.”
“Walking speed is best viewed as a marker of overall health, not a treatment.”
“The broader message is that physical activity is important at any age,” Verghese said. “Walking is an easy step-up point because you don’t need any special equipment. You can do it inside or outdoors, and you can do it on a regular basis. You can walk with a dog, you can walk with a friend.”
Any activity is beneficial if it’s done regularly and with the right intensity, he added.
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Rather than just trying to walk faster, the neurologist recommends that seniors focus on maintaining mobility through regular physical activity, strength training, balance exercises and good cardiovascular health.
“Walking speed is best viewed as a marker of overall health, not a treatment,” Verghese noted.
Major public health guidelines from the CDC and U.S. Physical Activity Guidelines recommend at least 150 minutes of moderate-intensity aerobic activity each week, such as brisk walking.
Major public health guidelines from the CDC and U.S. Physical Activity Guidelines recommend at least 150 minutes of moderate-intensity aerobic activity each week, such as brisk walking. (iStock)
This can be achieved by walking 30 minutes a day, five days a week, or about 20 to 25 minutes most days. Another option is to engage in shorter sessions that add up over the day.
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“You have to do it within your health limitations and medical conditions,” Verghese advised. “So if there are any medical concerns, I would get your physician to clear you before starting exercise.” The good thing about walking, he added, is that you can start at a slow pace and then gradually build up to a brisker pace.
“And then adding on strength and balance training, whatever age you are, I think is also important.”
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