Health

Family selling dream home to fund life-saving treatment for 5-year-old daughter

Published

1 year ago

October 18, 2024

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Family selling dream home to fund life-saving treatment for 5-year-old daughter

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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.

MOTHER FRANTIC TO SAVE CLINICAL TRIAL THAT COULD CURE HER DAUGHTER: ‘THE TREATMENT IS SITTING IN A FRIDGE’

“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.

FATHER CREATED A DRUG TO SAVE HIS SON FROM A RARE DISEASE, NOW OTHER FAMILIES ARE DESPERATE TO GET IT

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.

STIFF PERSON SYNDROME PATIENTS SHARE WHAT IT’S LIKE TO LIVE WITH THE RARE DISEASE

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.

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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.”

Health

‘Weight Loss Has Never Been About Calories’: How This Low-Insulin Diet Helped Lillie, 58, Drop 70 Lbs!

Published

2 hours ago

January 9, 2026

Press Room

‘Weight Loss Has Never Been About Calories’: How This Low-Insulin Diet Helped Lillie, 58, Drop 70 Lbs!

Low-Insulin Diet Helped Lillie, 58, Drop 70 Lbs, No Calorie Counting! | Woman’s World

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Health

Weight-loss experts predict 5 major treatment changes likely to emerge in 2026

Published

3 hours ago

January 9, 2026

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Weight-loss experts predict 5 major treatment changes likely to emerge in 2026

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Big moves are continuing in the weight loss landscape in the new year following breakthrough research of GLP-1 medications and other methods.

Weight-loss experts spoke with Fox News Digital about their predictions for the most major changes to come in 2026.

No. 1: Shift to whole-body treatment

Dr. Peter Balazs, a hormone and weight loss specialist in New York and New Jersey, shared that the most important shift is likely to label GLP-1 drugs as “multi-system metabolic modulators” rather than “simple weight loss drugs.”

MORE AMERICANS MAY BE CLASSIFIED AS OBESE UNDER NEW DEFINITION, STUDY SUGGESTS

“The treatment goal is no longer just BMI reduction, but total cardiometabolic risk mitigation, with effects now documented across the liver, heart, kidneys and vasculature,” he said.

“We are seeing a significant reduction in major adverse cardiovascular events … and progression of renal disease,” he went on.

The focus of GLP-1 drugs will widen beyond weight loss and diabetes, according to experts’ predictions. (iStock)

Philip Rabito, M.D., a specialist in endocrinology, weight loss and wellness in New York City, also shared that “exciting” advancements lie ahead for weight-loss drugs, including GLP-1s and GIPs.

OLDER AMERICANS ARE QUITTING GLP-1 WEIGHT-LOSS DRUGS FOR 4 KEY REASONS

“These next‑generation agents, along with novel combinations that include glucagon and amylin agonists, are demonstrating even more impressive weight‑loss outcomes than currently available therapies, with the potential for better tolerability and sustained results,” he told Fox News Digital.

“There is also tremendous optimism around new federal agreements with manufacturers that aim to make these medications more widely accessible and affordable for the broad population of patients who need them most.”

No. 2: More convenient dosing

The typical prescription for a GLP-1 medication is a weekly injection, but delivery and dosing may be changing to more convenient methods in 2026, according to Balazs.

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A daily 25 mg pill version of Novo Nordisk’s Wegovy, a semaglutide designed to treat obesity, is now approved and available for chronic weight management, offering a non-injectable option for some patients.

A once-weekly oral GLP-1 is currently in phase 2 trials, as well as an implant that aims for three to six months of drug delivery, Balazs noted.

Incisionless weight-loss procedures will rise as a lower-risk option, according to experts. (iStock)

No. 3: Less invasive surgery

In addition to decreased risk during surgery for GLP-1 users, Balazs also predicted that metabolic surgery without incision will rise as a better option.

“Incisionless endoscopic procedures — like endoscopic sleeve gastroplasty (non-surgical weight-loss procedure that makes the stomach smaller from the inside) and duodenal mucosal resurfacing (non-surgical procedure that resets part of the small intestine to help the body better handle blood sugar) — [may become] more durable and widely available,” he said.

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“These offer significant metabolic benefits with shorter recovery and lower risk than traditional surgery.”

Rabito agreed that “rapid progress” in minimally invasive weight‑loss procedures is “opening powerful new options for patients who are hesitant to pursue traditional bariatric surgery.”

Bariatric surgery remains the most effective weight loss method, one specialist says. (iStock)

This avenue offers “meaningful and durable weight reduction with less risk, shorter recovery times and no external incisions,” the expert added.

Dr. Muhammad Ghanem, bariatric surgeon at the Orlando Health Weight Loss & Bariatric Surgery Institute, reiterated that surgery remains “the most successful modality for the treatment of obesity … with the highest weight loss and most durable outcomes as of yet.”

No. 4: Younger GLP-1 users

As Novo Nordisk’s Wegovy has been indicated for adolescents over 12 years old as an obesity treatment, Balazs commented that pediatric use of weight-loss drugs is “now a clinical reality.”

He predicted that other alternatives are likely to be approved in 2026 for younger users.

No. 5: High-tech, personalized access

Amid the growth of artificial intelligence, Balazs predicted an expansion in the clinical implementation of AI-driven weight-loss methods.

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This could include categorizing obesity into sub-types like “hungry brain,” “emotional hunger” and “slow burn” to personalize how therapy is prescribed while moving away from “trial and error,” he said.

Ghanem agreed that there will likely be a “big focus” on individualized testing for causes of obesity in 2026, as it’s a disease that can have “different causes in different people,” thus requiring different treatments.

AI and other digital opportunities will drive more access for weight-loss patients, experts say. (iStock)

The doctor anticipates that more patients will seek combinations of comprehensive treatments and programs.

“Patients are more aware that now we have a few weapons in our arsenal to combat obesity, and [they] are seeking a multidisciplinary and holistic approach,” Ghanem said.

CLICK HERE FOR MORE HEALTH STORIES

Treatment options will also turn digital with the rise of prescription digital therapeutics (PDTs) for weight loss, Balazs predicted.

“These are software applications delivering cognitive behavioral therapy, personalized nutrition and metabolic coaching through algorithms, often integrated with continuous glucose monitors, and reimbursed as medical treatments,” he said.

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Ghanem added that body composition analyzers, like DEXA scans, will likely be more widely used as awareness grows about the limitations of BMI and weight in assessing obesity.

Angelica Stabile is a lifestyle reporter for Fox News Digital.

Health

Brain Health Challenge: Doctor Appointments for Your Mind and Body

Published

14 hours ago

January 9, 2026

Press Room

Brain Health Challenge: Doctor Appointments for Your Mind and Body

Congratulations, you’ve reached the final day of the Brain Health Challenge! Today, we’re asking you to do a few things that might feel a bit out of left field — like getting your blood pressure checked.

No, it isn’t as fun as playing Pips, but experts say it’s one of the most important things you can do for your brain. That’s because heart health and brain health are intrinsically linked.

High blood pressure, in particular, can damage brain cells, and it’s a significant risk factor for stroke and dementia. When blood pressure is too high, it places stress on the walls of arteries in the brain. Over time, that added stress can cause the blood vessel walls to thicken, obstructing blood flow. In other cases, the increased pressure causes the artery walls to thin and leak blood into the brain.

These changes to the blood vessels can sometimes cause a large stroke to occur. More commonly, the damage leads to micro-strokes and micro-hemorrhages, which cause fewer immediate problems and often go unnoticed. But if someone has hypertension for years or decades, these injuries can build up, and the person may start to experience cognitive impairment.

High blood pressure “is known as a silent killer for lots of reasons,” said Dr. Shyam Prabhakaran, the chair of neurology at the University of Chicago. “It doesn’t cause you any symptoms until it does.”

Because the damage accumulates over many years, experts say that managing blood pressure in midlife matters most for brain health. Hypertension can be addressed with medication or lifestyle changes, as directed by your doctor. But the first thing you need to do is know your numbers. If your blood pressure comes back higher than 120/80, it’s important to take it seriously, Dr. Prabhakaran said.

While you’re at it, there are a few other aspects of your physical health that you should check on.

Your eyes and ears are two of them. Hearing and vision loss have both been shown to increase the risk of dementia. Experts think that with less sensory information coming in to stimulate the brain, the regions that process hearing and vision can start to atrophy. What’s more, people with sensory loss often withdraw or are left out of social interactions, further depriving them of cognitive stimulation.

Oral health can also affect your brain health. Research has found a connection between regular flossing and reduced odds of having a stroke. That may be because good oral health can help to reduce inflammation in the body. The bacteria that cause gum disease have also been tied to an increased risk of Alzheimer’s.

And have you gotten your shingles vaccine? There is mounting evidence that it’s a powerful weapon for protecting against dementia. One study found that it lowered people’s odds of developing the condition by as much as 20 percent.

To wrap up this challenge, we want you to schedule a few medical appointments that benefit your brain, as well as your body.

After five days of feeding, exercising and challenging your brain, you are well on your way to better cognitive health. Thanks for joining me this week, and keep up the good habits!