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.”
Dr. Megan Jack, a neurosurgeon in Cleveland, often works 60 or 70 hours a week. And she’s completely unavailable when she’s in the operating room. That makes it tough to be a caregiver for her 76-year-old mother, who lives in a separate unit on Dr. Jack’s property, 30 minutes away from the hospital.
To help care for her mother, who has Alzheimer’s disease, Dr. Jack uses an array of high-tech tools, some of which didn’t exist just a few years ago. She manages her mother’s medications with a smart pill box. She changes her television channels with an app, sends appointment reminders through a digital message board — and, with her mother’s blessing, uses cameras for communication and monitoring.
“It’s been invaluable that I can both make sure she’s safe and make sure everything is going well,” Dr. Jack said, “but also give her the independence and the freedom that she still deserves.”
America is aging rapidly. Roughly 11,000 people are turning 65 each day in the United States. And many of them — 75 percent of people over 50, according to AARP’s most recent survey, from 2024 — hope to spend their remaining years in the comfort of their homes, rather than in assisted-living or other care facilities.
One thing that could help fulfill those wishes is the budding field of “age tech,” which encompasses tools that support older adults. Industry experts say that age tech is making homes safer for older adults and is easing the minds of their caregivers, especially those who live far away or work outside the home.
Dr. Jack said that age tech had “really allowed me to integrate caregiving into my life, as opposed to caregiving taking over my life.”
The age tech boom
If older adults don’t have loved ones who are both close by and able to help, they might believe they don’t have a ton of options. They can live independently, or, if they can afford it and qualify medically, they can move to an assisted-living facility or a nursing home, without a lot of choices in between. In-home help can be expensive without Medicaid and can also be difficult to find, given the serious shortage of home care workers.
Age tech can help bridge some important gaps, said Emily Nabors, the associate director of innovation at the National Council on Aging, a nonprofit advocacy group. Already, AARP reports that 25 percent of caregivers are remotely monitoring their loved ones with apps, videos or wearables, nearly double the percentage from five years ago.
“We used to say homes are the health care settings of the future, but they really are health care settings now,” Ms. Nabors said. “Aging in place is very realistic.”
More than 700 companies are in AARP’s AgeTech Collaborative, a group that connects businesses, nonprofits and funders to help get new technologies off the ground. Altogether, the collaborative’s start-ups have raised nearly $1 billion in the past four years.
The products include smart walkers, glasses with lenses that provide real-time captions of conversations for those with hearing issues, and a concierge service that connects older people to drivers and deliveries, even if they don’t have a smartphone.
Ms. Nabors does foresee some affordability and access barriers to age tech, including the lack of high-speed internet in rural areas, but she said one vital resource would be local aging agencies, which can offer advice and, sometimes, free support.
Janet Marasa leaned on the agency near her home in Rockland County, N.Y., to get a free robotic pet for her mother, Carol DeMaio, 80, who has dementia. The pets, manufactured by a company called Joy for All, aim to offer emotional support without the upkeep.
Ms. DeMaio named the robotic dog Sabrina, after a golden retriever who died. The new Sabrina stays at the foot of her bed at night. As soon as Ms. DeMaio stirs awake, the dog reacts. “She said it gives her a reason to get up in the morning,” Ms. Marasa said.
The dog has been a boon to her, too. “It provides comfort and interaction that I can’t provide every second,” said Ms. Marasa, who lives with her mother but works full time for the county government. “It gives her something that she can feel like is totally her own.”
In Broward County, Fla., where the population of residents over 85 is expected to nearly triple over the next few decades, the local agency on aging has used state and federal money and private grants to provide technologies to nearly 4,000 of the county’s seniors at no cost.
Its offerings include a company that uses radar to sense falls and a program that allows seniors to make video calls through their televisions.
“The possibilities are endless,” Charlotte Mather-Taylor, the agency’s chief executive, said. “It’s pretty great to see all the new technology coming out so quickly, and I think that can only benefit our older population and also our caregivers.”
Here comes A.I.
Even technologies not specifically marketed as age tech can help older adults maintain their independence, said Laurie Orlov, founder of the blog Aging and Health Technology Watch. She pointed to video-calling and telehealth platforms; remotely controlled thermostats and lights; and smart speakers, doorbells and watches.
“All technology can be customized to help older adults stay longer in their homes and help their family members feel good about it, or at least tolerate it,” Ms. Orlov said.
That will only become more true with the continued proliferation of artificial intelligence, Ms. Orlov added. Some older adults are already using conversational A.I. to get answers about things like the weather or their medications. (Relying too heavily on A.I. can, however, have negative consequences because chatbots often give flawed medical advice and can lead patients astray.) A.I. can also assist in pattern detection: alerting caregivers to signals that might indicate declines in someone’s cognition or mental health, such as changing their speech pattern or leaving the house less frequently.
One A.I.-powered age tech tool is ElliQ, a tabletop companion robot that looks like a sleek silver desk lamp with a screen. About a year and a half ago, Camille Wolsonovich got one for free, thanks to a local nonprofit, for her 90-year-old father, Bill Castellano. He lives alone in a senior community.
Ms. Wolsonovich, who runs a consulting business, relies on ElliQ to lead her father in exercises and remind him to take his pills and drink water. The robot also asks her father about his sleep and mood via automated check-ins.
“Everything’s just another layer that gives us more confidence, from a caregiving standpoint, that he’s good,” Ms. Wolsonovich said. “I don’t have to necessarily track everything all the time and be overbearing.”
As for Mr. Castellano? He plays trivia digitally and converses daily with ElliQ. The robot, which has a friendly female voice, asks questions, cracks jokes and remembers his likes, dislikes and friends. “She’s great company,” he said. “Everybody around me wants one.”
What about ethical concerns?
Clara Berridge studies the ethics of age tech at the University of Washington.
She has many privacy concerns, namely that most direct-to-consumer products aren’t subject to medical privacy laws, despite being privy to sensitive health information. Though she hopes the federal government will eventually step in to regulate these products, as it has in other countries, the onus remains on the consumer for now.
And even if an age tech product isn’t selling mom’s personal data to the lowest bidder, Dr. Berridge said there’s still the question of whether certain tools are ethical.
“It’s really important for caregivers to recognize that using these new technologies that give them more information about someone can represent greater intrusion into someone’s life,” she said.
What may be well-intentioned monitoring could reveal information that an older adult would rather keep private, such as issues with incontinence, or the comings and goings of a romantic partner.
“It can lead to somebody feeling infantilized,” Dr. Berridge said. “Like there’s not a place to hide within your own home.”
Her research shows that adult children often underestimate how much their parents can understand about technology and how much they want to be involved in tech-related decisions.
She encouraged caregivers to have transparent conversations about privacy implications and to avoid ultimatums or the idea that any decision must be permanent. She said caregivers should put themselves in their parents’ shoes: Is this something they’d want their own children monitoring?
Dr. Berridge is working on an advanced directive for technology, which outlines older people’s wishes for how technology is used in their care. Ultimately, she hopes that questions about age tech will become a standard part of planning for the future.
“If you’re at the start of what, for many people, ends up being a long road of supporting someone potentially through the end of their life,” she said, “seeking to understand each other’s concerns and priorities better is time very well spent.”
NEWYou can now listen to Fox News articles!
A distraught mother who thought she was having a heart attack was instead hospitalized with broken heart syndrome — otherwise known as takotsubo syndrome (TTS) — less than a year after her veteran son tragically took his own life.
Dawn Turner, 57, of the U.K., lost her son in August of last year.
Just last month, the mom of three awoke with “unbearable” chest pains, she said — and called an ambulance, worried she was going into cardiac arrest. But when she arrived at the hospital, doctors told her she was suffering from the effects of grief caused by a broken heart, as news agency SWNS reported.
SIMPLE DINNER TABLE HABIT LINKED TO POOR DIET AND HIGHER HEALTH RISKS IN ADULTS OVER 60
TTS is a temporary, reversible heart condition often triggered by extreme emotional or physical stress, such as grief, fear or severe illness, according to experts.
Symptoms usually mimic a heart attack, with sudden and severe chest pain and shortness of breath the most common — and it primarily affects women over the age of 50.
A mom whose soldier son took his own life feared she was suffering cardiac arrest — only to be told by hospital doctors that she was feeling the effects of grief caused by a broken heart. Dawn Turner, mother of deceased soldier Rob Homans, is pictured above, April 2026. (SWNS)
Turner, of Eckington in Worcester, said, “I was [sitting] downstairs earlier that night and thought I had a bit of indigestion. I went to bed and just couldn’t get comfortable — I was breaking out in a sweat and had heart palpitations.
“Then, around midnight, I had pain down my arm and in my jaw. I was still putting it down to indigestion… My partner Paul asked me if I was all right, and I said, ‘I think I’m having a heart attack.’”
HIDDEN CAUSE OF VETERANS’ STRUGGLES DRIVES RENEWED URGENCY IN VA MESSAGING
She said she couldn’t catch her breath — “and my heart felt as though it was missing a beat and then [started] thudding again. For those moments, I truly believed I was having a heart attack.”
“Your heart is all over the place — there’s an extra beat,” Turner was told.
She said her partner called emergency services, and an ambulance arrived within five minutes.
“They came in and linked me up to an ECG. They said, ‘Your heart is all over the place — there’s an extra beat, and it’s all over the place,’” she said, as SWNS reported.
Turner was rushed to the hospital by ambulance.
Turner is shown with her son in full dress uniform. He worked as an artilleryman and spent 10 years in the U.K.’s Royal Horse Artillery after joining in 2006. He was battling mental health challenges after his military service, and ultimately took his own life. (SWNS)
In emergency care, Turner was also given blood tests.
She added, “They came back and said I didn’t have the enzymes produced from a heart attack in my blood. But they said there [was] something going on.”
After undergoing more tests and seeing a cardiologist, Turner was told she had takotsubo syndrome.
WOMAN BEATS DEADLY BRAIN CANCER WITH EXPERIMENTAL STEM CELL THERAPY: ‘TRULY AMAZING’
“I told [the doctor] that my heart feels broken. I told her about [my son] Rob, and she said it’s exactly that. She said it’s a real thing, and that I’d been under so much stress. The body can only take so much, and the grief and the stress can be quite physical.”
Turner’s son committed suicide in August 2025 after struggling to get help with his mental health.
He spent 10 years in the Royal Horse Artillery after joining in 2006, when he worked as an artilleryman.
Turner’s son did two tours of duty in Afghanistan, she said. After he returned to civilian life, he began suffering from a number of health conditions. She’s shown above with a flower-draped memorial to her son. (SWNS)
He did two tours of duty in Afghanistan, she said, and returned to civilian life in 2016 before suffering several worsening health conditions.
Turner, who is also the CEO of a veterans charity called Stepway, “When he left the army, he got married, and they settled down in London. He walked straight into a job as a delivery driver. But then his health took a downward spiral, and he started having digestive troubles.”
YOUR HEART MAY BE OLDER THAN YOU THINK — AND THE NUMBER COULD PREDICT DISEASE RISK
He was eventually told he had PTSD — but those symptoms may be similar to those of mild traumatic brain injury, Turner said.
“He was deaf in one ear from using the guns,” she said. “He realized he was putting so much pressure on his marriage, so he moved back up with me. He started to build himself up — then COVID hit.”
CLICK HERE TO DOWNLOAD THE FOX NEWS APP
Turner said there were unfortunate delays as her son tried to get access to various services and facilities.
“When people lose loved ones, you’re obviously distraught, but you eventually find closure,” she said, per SWNS. “I found peace when I lost my sister in 2015. But with Rob, I can’t find closure because there’s no justice there.”
“I had never really understood that a person could become so overwhelmed by stress and grief that it physically affects the heart,” said the grieving mom. “Broken heart syndrome can look and feel like a heart attack.” (iStock)
Turner is now on the mend and hopes to be fully recovered in a couple of weeks, SWNS reported.
“Until that moment, I had never really understood that a person could become so overwhelmed by stress and grief that it physically affects the heart,” she shared. “Broken heart syndrome can look and feel like a heart attack. It was a warning sign for me, and for anyone. It can change the shape of one of your heart chambers … it can cause some serious damage.”
She added, “The cardiologist told me that thankfully, my heart itself is healthy and there was no damage, but that it will take around two weeks to a month for my heart to reboot itself.”
“Maybe the extra [heart]beat is for Rob. You are carrying on living for him,” her partner told her.
Turner was told she needed to rest, seek counseling and make lifestyle changes to reduce stress.
“Things have settled down, and I’m taking things easy — I’m pacing myself now, and I feel a lot better. Paul said, ‘Maybe the extra beat is for Rob. You are carrying on living for him.’”
CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTER
Turner said, “That broke me and healed me a little bit all at once.”
Fox News Digital previously reported that broken heart syndrome, which causes the heart to temporarily weaken, has been linked to the brain’s reaction to stress, as studies have found.
CLICK HERE FOR MORE HEALTH STORIES
In an article published in the European Heart Journal in March 2019, Swiss researchers said they found that the syndrome is linked to the way the brain communicates with the heart.
Broken heart syndrome, which causes the heart to temporarily weaken, has been linked to the brain’s reaction to stress, studies have found. (iStock)
Caused by intense emotional events, TTS is a rare, temporary condition that weakens the left ventricle and disrupts its normal pumping function.
The syndrome causes the heart’s main pumping chamber to change shape and get larger. The heart muscle becomes weaker, and its pumping action loses strength.
TEST YOURSELF WITH OUR LATEST LIFESTYLE QUIZ
Symptoms include sudden, intense chest pain, pressure or heaviness in the chest, along with shortness of breath.
It is treated with beta blockers and blood-thinning medicine to reduce risks of clots and other flareups.
Use left and right arrow keys to navigate between menu items.
Use escape to exit the menu.
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
-
News22 minutes agoPentagon says Navy secretary is leaving, the latest departure of a top defense leader
-
New York2 hours agoGunman Who Killed Baby in Brooklyn Was Targeting Her Father, Police Say
-
Detroit, MI2 hours agoHow these Detroit farmers are fighting for neighborhood food security
-
San Francisco, CA3 hours agoS.F. hospital stabbing analysis confirms Mission Local reporting on security lapses
-
Dallas, TX3 hours agoIt’s a big week for restaurant openings and closings in Dallas
-
Miami, FL3 hours agoCain, Kushner launch South Florida JV with plans for Edgewater rental tower
-
Boston, MA3 hours agoMBTA Green Line trains out from Kenmore to Boston College on B branch through April 30
-
Denver, CO3 hours agoNuggets vs. Timberwolves | 3 keys to a Denver win in Game 3