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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The release of an updated food pyramid this week has sparked mixed reactions from doctors and dietitians.
One of the most noteworthy shifts in the 2025-2030 Dietary Guidelines for Americans — announced by HHS officials during a Jan. 7 press conference at the White House — is a greater emphasis on “high-quality proteins,” including red meat and eggs, as well as full-fat dairy.
The new guidelines focus on “real, whole, nutrient-dense foods,” and a dramatic reduction in highly processed foods, added sugars, refined carbohydrates and unhealthy fats.
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“Protein and healthy fats are essential and were wrongly discouraged in prior dietary guidelines,” Health Secretary Robert F. Kennedy Jr. said during the press conference. “We are ending the war on saturated fats.”
Nick Norwitz, a Harvard- and Oxford-trained researcher known for his work in metabolic health, shared his reaction to the new guidelines.
The release of an updated food pyramid this week has sparked mixed reactions from doctors and dietitians. (realfood.gov)
Despite how the new pyramid is presented, he noted, the actual guidelines for saturated fat consumption haven’t changed, as they still state that, “in general, saturated fat consumption should not exceed 10% of total daily calories.”
The intake of unprocessed whole foods rich in saturated fat, especially dairy fat, tends to be associated with improved health outcomes, according to Norwitz.
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“Full-fat dairy — especially cheese, for example — tends to be associated with lower BMI, reduced rates of diabetes and even reduced dementia risk,” he told Fox News Digital. “There are, of course, nuances — but ‘ending the war’ on saturated fat seems reasonable.”
Risks vary, experts say
Experts cautioned about the potential health risks of exceeding the recommended intake of saturated fat, including higher rates of LDL “bad” cholesterol, which is known to increase the risk of cardiovascular disease.
“The recommendation to limit saturated fat to 10% of total calories is based on the research showing that higher rates increase LDL cholesterol and associated risks for cardiovascular disease,” Sherry Coleman Collins, a food allergy dietitian and expert from the Atlanta metropolitan area, told Fox News Digital.
One of the most noteworthy shifts in the 2025-2030 Dietary Guidelines for Americans is a greater emphasis on “high-quality proteins” — including red meat and eggs — as well as full-fat dairy. (iStock)
Nutrition should be personalized and is dependent on multiple factors, she said, including age, gender, activity level and genetic risk factors.
“The total saturated fat an individual might safely consume is influenced by their size and total calorie needs, as well as potentially genetic differences,” Coleman Collins said.
Norwitz agreed, adding that “the specific food source and interaction with the unique host and their broader dietary context should take the spotlight.”
Dr. Pooja Gidwani, a double board-certified doctor of internal medicine and obesity medicine in Los Angeles, pointed out that not everyone has the same “tolerance” for saturated fats.
“If increasing saturated fat leads to a meaningful rise in LDL cholesterol or ApoB (Apolipoprotein B, a protein found on the surface of certain cholesterol-carrying particles in the blood), that intake level is excessive for that individual, regardless of improvements in weight or glucose metrics,” she said.
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“This personalized approach becomes increasingly important in midlife and beyond, when cardiovascular disease becomes the dominant driver of morbidity and mortality and when tolerance for cumulative atherogenic (artery-clogging) exposure is lower.”
For those who need to reduce LDL cholesterol or have a higher cardiovascular risk, the American Heart Association recommends an even lower amount of saturated fats — less than 6% of total daily calories.
Experts cautioned about the potential health risks of exceeding the recommended intake of saturated fat, including higher rates of LDL “bad” cholesterol. (iStock)
Gidwani also cautioned that diets emphasizing saturated fat could crowd out fiber and unsaturated fats, “both of which play independent roles in cholesterol clearance, insulin sensitivity, gut health and inflammation.”
“Saturated fat-heavy patterns are also calorie-dense, which can quietly undermine long-term weight management if intake is not carefully regulated,” she added.
Not all saturated fats are equal, experts say
The effects of saturated fat depend on what specific foods are being consumed, according to experts.
“I would recommend choosing minimally processed or unprocessed forms of foods,” said Tanya Freirich, a registered dietitian nutritionist in Charlotte, North Carolina. “For example, in place of a hot dog — which has additives, nitrites, sodium and fillers — consuming a chicken thigh would be a much better choice.”
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Gidwani reiterated that the amount of processing plays a big role.
“Processed meats are consistently associated with worse cardiometabolic outcomes and represent the clearest category to limit,” she said. “The risk here is not only saturated fat, but also sodium load, preservatives and the broader dietary pattern they tend to accompany.”
“Full-fat dairy — especially cheese, for example — tends to be associated with lower BMI, reduced rates of diabetes and even reduced dementia risk,” an expert told Fox News Digital. (iStock)
Unprocessed red meat, the doctor said, can fit into an overall healthy diet in smaller amounts, particularly when consumed alongside fiber-rich plants and minimally processed foods.
“However, from a longevity perspective, it should be viewed as optional rather than foundational, especially for individuals with elevated cardiovascular risk,” she added.
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When it comes to dairy, Gidwani noted that fermented options are “metabolically more favorable” than butter or cream.
“However, saturated fat from dairy is still not necessary to prioritize for metabolic health or longevity,” she said. “Excessive reliance on dairy fat can displace healthier fat sources without offering clear long-term benefit.”
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Overall, the doctor recommends unsaturated fat sources, including extra virgin olive oil, nuts, seeds, avocado and omega-3-rich fish, as primary dietary fats.
“These consistently support lipid profiles, insulin sensitivity and vascular health,” Gidwani said. “Saturated fat can exist within a balanced diet, but it should remain secondary rather than emphasized.”
Why the big picture matters
Saturated fat is just one piece of a much wider nutrition puzzle, the experts agreed.
Unprocessed red meat can fit into an overall healthy diet in smaller amounts, particularly when consumed alongside fiber-rich plants and minimally processed foods, one expert said. (iStock)
“Our heart health is not determined by one type of fat or one type of cholesterol, but the sum of many parts — our entire diet, our exercise habits, our stress and so much more,” Freirich said.
She recommends consulting a registered dietitian for guidance on unique dietary needs based on age, gender, activity level and medical history.
“Our heart health is not determined by one type of fat or one type of cholesterol, but the sum of many parts — our entire diet, our exercise habits, our stress and so much more,” said an expert. (iStock)
New Jersey-based dietitian Erin Palinski-Wade, author of “2-Day Diabetes Diet,” added that the message should be to focus more on overall patterns.
That means “plenty of fiber-rich plants, lean protein at every meal (including those that also contain fiber, such as nuts and seeds) and a reduction in overall intake of added sugars.”
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“That change will drive true health improvements,” she said.
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Missing out on adequate sleep could be taking years off your life.
New research from the Oregon Health & Science University (OHSU), published in the journal Sleep Advances, found that poor sleep may shorten life expectancy more than other lifestyle factors like diet, exercise and loneliness.
The researchers analyzed nationwide CDC survey data, identifying trends associated with average life expectancy by county, according to a press release.
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The study found that lack of adequate sleep led to higher mortality risk in every U.S. state and was the top behavioral driver compared to other factors, only behind smoking.
Senior study author Andrew McHill, Ph.D., associate professor and director of the Sleep, Chronobiology, and Health Laboratory in the OHSU School of Nursing, noted in a statement that he did not expect sleep to be “so strongly correlated” to life expectancy.
Poor sleep is directly correlated with shorter life expectancy, the study reveals. (iStock)
“We’ve always thought sleep is important, but this research really drives that point home: People really should strive to get seven to nine hours of sleep, if at all possible,” he said.
“This research shows that we need to prioritize sleep at least as much as we do [in] what we eat or how we exercise.”
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In a previous interview with Fox News Digital, Dr. Daniel Amen, psychiatrist and owner of Amen Clinics in California, emphasized how important sleep is for brain function and longevity.
Researchers suggest people should prioritize sleep just as much as diet and exercise. (iStock)
“Sleep is so important,” he said. “When you sleep, your brain cleans and washes itself. And if you don’t sleep seven to nine hours at night, your brain looks older than you are — there’s less blood flow, and it increases inflammation in the brain.”
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“Your brain doesn’t have enough time to get rid of the toxins that build up during the day.”
Lack of adequate sleep can lead to poor decisions and foster toxic cycles, the doctor warned.
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“If your brain has less activity in the front part, not only are you tired, but you’re also hungrier, and you’re more likely to not make the best decisions,” he said.
“Which, of course, will stress you out, and then you won’t sleep well the next night.”
A doctor suggests being “purposeful” about going to bed and waking up each day. (iStock)
One small change to promote longevity and brain health is to try getting to bed 15 minutes earlier, Amen suggested.
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“Really be purposeful about not being distracted by Netflix or your phone,” he said.
“And when you get up in the morning, say to yourself, ‘Today is going to be a great day.’ The more positive you are, the better your brain.”
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