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.
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.
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.”
CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTER
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.
For more Health articles, visit www.foxnews.com/health
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.”
Sign Up
Create a free account to access exclusive content, play games, solve puzzles, test your pop-culture knowledge and receive special offers.
Already have an account? Login
Use left and right arrow keys to navigate between menu items.
Use escape to exit the menu.
As Los Angeles battles the worst wildfires in the city’s history, thousands of people have been displaced or have seen their homes burn to the ground.
Around 130,000 people were ordered to evacuate and some 10,000 structures were destroyed, according to the Associated Press. At least 10 people have died as a result of the blazes.
The devastation of the fires has undoubtedly taken a grave toll on the psyches of those affected, experts agree.
STEVE GUTTENBERG CALLS LA WILDFIRES ‘GREAT EQUALIZER,’ URGES PEOPLE TO LEAN ON ONE ANOTHER
Fox News Digital spoke with celebrities and mental health experts, who offered the following guidance for the people impacted.
Recognize your feelings
For those who have experienced a loss from the fires, common reactions include shock, disbelief and confusion, according to David Kessler, a grief counselor in Los Angeles and founder of Grief.com.
“I call it grief brain,” he told Fox News Digital.
Luke Dexter reacts as he sifts through the remains of his father’s fire-ravaged beachfront property in the aftermath of the Palisades Fire on Jan. 10, 2025 in Malibu, Calif. (AP Photo/John Locher) (AP Newsroom)
“Your mind is trying to comprehend what happened, and it’s a hard thing for it to do, because this is unimaginable that your house, your safety, is suddenly gone.”
Not all grief is related to death, Kessler noted, as there are many different types of losses.
“I always say grief is a change you didn’t want — and certainly a fire is a change we didn’t want,” he added.
WHAT IS PTSD? SYMPTOMS THAT CAN EMERGE AFTER EXPERIENCING A TRAUMATIC EVENT
It’s important to “self-validate” the reality of the loss, he said.
“People might give you toxic positivity of, ‘well, at least no one died,’” he said. “And while that’s true, the reality is you still have lost your home. Don’t let anyone minimize that.”
“The loss of a home is devastating and it can take years to recover.”
“I think we’re going to deal with a lot of depression after this, a lot of sadness.”
Actor Steve Guttenberg, who lives in Pacific Palisades, California, where fires erupted on Tuesday, shared how the disaster has impacted his own mental health.
“I’ve seen so much tragedy the last three or four days that I’ve got to be careful to … keep a hold of my mind,” he said in an interview with Fox News Digital.
“And I think that we’re going to deal with a lot of depression after this, a lot of sadness. And it’s going to be really tough because this is like nothing you’ve ever seen.”
Actor Steve Guttenberg, who lives in Pacific Palisades, California, where fires erupted on Tuesday, shared how the disaster has impacted his own mental health. (AGUSTIN PAULLIER/AFP via Getty Images; Fox News)
Gutenberg noted that while it’s “very normal” to be down, he is trying not to let himself “go down that hole.”
“But I’m pretty sad about this,” he added.
HOW TO COPE WITH ‘COLLECTIVE GRIEF’ WHEN MASS TRAGEDY STRIKES
Jonathan Alpert, a psychotherapist in Manhattan and Washington, D.C., noted that the grief following the Los Angeles fires is “profound.”
“It’s not just about the physical loss of homes or belongings — it’s also about the sense of safety and normalcy that has been lost,” he told Fox News Digital.
“It’s important for people to feel emotions and not ignore them. This is a normal reaction to such overwhelming loss and tragedy.”
Reach out for support
Guttenberg emphasized the importance of maintaining connections with others and drawing support from the community during a disaster of this magnitude.
“We’re social animals — we need people,” he said. “So I’m reaching out to my friends. There’s no way to meet right now because it’s so dangerous — so the best thing you cn do … is call and reach out and maybe you can drive somewhere.”
Experts agreed that it’s essential to avoid isolating yourself after a loss. “We need to be taken care of. We need other people around us.” (AP Newsroom)
Most of the people in town have evacuated, he pointed out. “There’s probably 10% of the population left here. Or less.”
Kessler reiterated that connection is critical after this type of trauma. “We need to be taken care of. We need other people around us. People equal safety,” he said.
“We need other people around us. People equal safety.”
Pastor Jesse Bradley of Grace Community Church outside Seattle, Washington, agreed that it’s essential to avoid isolating yourself after a loss.
“We need God and we need each other. Community is vital,” he told Fox News Digital.
“Family, friends and neighbors care about you. God sends His love through these people. Reject isolation. Don’t shut down and don’t shut people out.”
Take action
“In times of crisis such as this, regaining even small amounts of control can be grounding,” Alpert said.
He recommends creating a plan for what’s next, whether it’s finding temporary housing, accessing local resources or starting the process of rebuilding.
“Taking action — no matter how small — can help you move forward.”
Ben Treger hugs his wife Sarah Treger after finding his grandfather’s watches at the remains of their Pacific Palisades home on Thursday, Jan. 9, 2025. “If you do have survivor’s guilt, I always say the best thing is to take action,” one expert advised. (Juan Carlo/Imagn)
Kessler agreed, noting that people who are in the area but did not experience loss may feel a sense of relief mixed with guilt.
“If you do have survivor’s guilt, I always say the best thing is to take action,” he advised.
In the longer term, advocacy efforts can be a powerful tool in dealing with trauma, Alpert noted.
MIKE POSNER REVEALS HOW FAITH REDIRECTED HIS LIFE, OFFERS ADVICE ON SPENDING HOLIDAYS WITH FAMILY
“Working to improve fire prevention policies, supporting relief efforts or helping neighbors rebuild can provide a sense of purpose and empowerment during this difficult time,” he said.
Some people may be angry about the systems that failed to prevent the fires in the first place, Alpert acknowledged, and this anger can be a “powerful motivator.”
“Taking action — no matter how small — can help you move forward.”
“Use that energy to demand better, but don’t get stuck on the anger,” he advised.
“By holding leaders accountable for the policies — or lack thereof — that contributed to this devastation, and by asking the right questions and demanding answers, you might start to feel better.”
Seek professional help as needed
“The L.A. fires no doubt will not just leave physical scars, but deep emotional ones, too,” Alpert said.
“For many people, the fear, panic and helplessness experienced during the fires don’t just disappear — they linger, creating flashbacks, anxiety and difficulty functioning.”
“For many people, the fear, panic and helplessness experienced during the fires don’t just disappear — they linger, creating flashbacks, anxiety and difficulty functioning.” (iStock)
In many cases, this can lead to post-traumatic stress disorder (PTSD). Symptoms of this condition can include vivid memories of the fires, nightmares, hypervigilance or avoidance of anything that reminds someone of the event, Alpert said.
“It’s important to see this not as weakness, but rather, the mind’s and body’s way of trying to cope with extreme stress.”
“While the fires were devastating, they don’t diminish your strength or character.”
As you seek help, it’s also important to understand that PTSD doesn’t define you, he added.
“It’s a part of your experience, not your identity. While the fires were devastating, they didn’t diminish your strength or character.”
Lean on your faith
For those who have experienced traumatic grief, Kessler emphasized the importance of faith and spirituality.
CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTER
“They help ground us in a world full of fear,” he said. “And when we’ve lost everything, it can feel like our faith is the one thing we have to hold onto.”
During a time of crisis, Guttenberg said it’s important to “rely on anything that you believe in.”
Cesar Plaza becomes emotional while looking at his home destroyed by the Eaton Fire in Altadena, California, on Jan. 9, 2025. “It’s easy to be consumed with what you no longer have,” a pastor told Fox News Digital. (AP Photo/Nic Coury) (AP Newsroom)
“If you believe in your mom and dad, you rely on them, your brothers and sisters, your friends, your family. God, the universe.”
Above all, he added, “Just remember, you’re not alone. God is always with you. Jesus is always with you. You’ve got to hang on to that.”
Find ways to exercise gratitude
During times of hardship, it’s important to recognize the good things that are still in your life, Pastor Bradley said.
“It’s easy to be consumed with what you no longer have,” he told Fox News Digital.
For more Health articles, visit www.foxnews.com/health
“You need to be intentional to take inventory of the blessings in your life. For example, you might lose a home or business, but you still have family.”
This mindset will help you keep a healthy perspective and protect gratitude, Bradley added.
Health
Scientists May Be Able to Make Grapefruits Compatible With Medications They Currently Interfere With
You may be among the millions of people who have seen a surprisingly specific warning like this on the labels of drugs you take:
Avoid eating grapefruit or drinking grapefruit juice while using this medication.
Such warnings are issued for dozens of substances, including docetaxel, a cancer drug; erythromycin, an antibiotic; and some statins, the cholesterol-lowering drugs prescribed to more than a third of American adults over 40.
The problem is a set of molecules, furanocoumarins. High levels of furanocoumarins interfere with human liver enzymes, among other processes. In their presence, medications can build up to unhealthy levels in the body. And grapefruits and some related citrus fruits are full of them.
But there is no such warning for other kinds of citrus, such as mandarins and other oranges. Citrus researchers at the Volcani Center in Israel reported Wednesday in the journal The New Phytologist that, by crossing mandarins and grapefruit, they’ve uncovered genes that produce furanocoumarins in some citrus fruits. It’s a finding that opens the possibility of creating grapefruit that doesn’t require a warning label.
Scientists had worked out the compounds’ structures and pieced together a basic flowchart of how they are made years ago, said Yoram Eyal, a professor at the Volcani Center. But the precise identities of enzymes catalyzing the process — the proteins that snip off a branch here, or add a piece there — remained mysterious. He and his colleagues knew that one way to identify them was to breed citrus high in furanocoumarins with those without. If the offspring of such a cross had varying levels of the substances, it should be possible, by digging into their genetics, to pinpoint the genes for the proteins.
“We were afraid to approach it, because it’s very time-consuming and it takes many years,” he said, noting how involved it can be to grow new trees from seeds and assess their genetics. “But finally, we decided we have to dive in.”
When they examined the offspring of a mandarin and a grapefruit, the researchers saw something remarkable. Fifty percent of the young plants had high levels of furanocourmains, and 50 percent had none. That particular signature meant something very specific, in terms of how the ability to make these substances is inherited.
“We saw there was only one gene that could have controlled it,” said Livnat Goldenberg, a Volcani Center researcher who is the lead author of the new study.
The researchers soon identified the gene controlling the production of furanocoumarins in leaves and fruit, which produces an enzyme called 2-oxoglutarate-dependent dioxygenase, or 2OGD for short. Mandarins, it turns out, have a mutated form of this gene that keeps the enzyme from functioning properly. This version cropped up in all the mandarin and orange varieties the researchers checked, explaining why they do not cause the same problems as grapefruit in people taking prescription medications. In these plants, furanocoumarin production is paused.
With gene editing technology, it should be possible to alter the gene in grapefruit as well, Dr. Eyal suggests. The team at the Volcani Center is now exploring that project.
Looking at how widespread this mutated version is in mandarins and some other citrus, the scientists speculate that some gene nearby on the genome must play an important role in a highly prized trait. A long-ago citrus breeder, selecting for some unknown quality, must have unwittingly spread this furanocoumarin-busting version of the gene to an ancestor of modern varieties of mandarins and oranges.
All these years later, that person’s work is coming to light, under the gaze of geneticists, who may, someday, put grapefruit back on the menu.
Michigan State Legend Reveals the Secret to His Greatness
‘Light and fluffy’ snow sweeps across Massachusetts on Saturday
‘As bad as I’ve ever seen it’: Partisan dysfunction worsens in Minnesota Legislature
Players to watch for in Mississippi State vs. Kentucky
KWTO adds mid-Missouri morning show, Guaranty Bank names new president
Colorado Rockies game no. 116 thread: Zac Gallen vs José Ureña
Why Marjorie Taylor Greene was ‘kicked out’ of the Freedom Caucus according to Rep. Buck
See it: Tesla crashes into Columbus convention center at 70 mph
Fox News Politics: Georgia the whole day through
Death of missing Oregon girl found in stream ruled homicide
Tulsa Massacre Was a ‘Coordinated, Military-Style Attack,’ Federal Report Says
'Space coast' congressman sets bold goal for American moon missions
Brussels, my love? Poland's New Year's resolution
Fox News headed for trial, again, over 2020 election fraud claims
Trump Blames L.A. Wildfires on Newsom Using Familiar Tactics
-
Sports1 week agoThe top out-of-contract players available as free transfers: Kimmich, De Bruyne, Van Dijk…
-
Politics1 week agoNew Orleans attacker had 'remote detonator' for explosives in French Quarter, Biden says
-
Politics1 week agoCarter's judicial picks reshaped the federal bench across the country
-
Politics7 days agoWho Are the Recipients of the Presidential Medal of Freedom?
-
Health6 days agoOzempic ‘microdosing’ is the new weight-loss trend: Should you try it?
-
World1 week agoSouth Korea extends Boeing 737-800 inspections as Jeju Air wreckage lifted
-
News1 week ago21 states are getting minimum wage bumps in 2025
-
/cdn.vox-cdn.com/uploads/chorus_asset/file/25822586/STK169_ZUCKERBERG_MAGA_STKS491_CVIRGINIA_A.jpg "Meta is highlighting a splintering global approach to online speech")
Technology2 days agoMeta is highlighting a splintering global approach to online speech