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.
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.”
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An Atlanta woman was taking her daily vitamins on vacation when she accidentally swallowed her diamond wedding ring.
Dannah McMichael, 39, and her husband, Randy McMichael, were on vacation in Phuket, Thailand, when the unthinkable happened.
“We went out for dinner and drinks and when I got back, I wanted to shower,” she told SWNS.
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The travel blogger said she was “beyond jet-lagged” after a long day of traveling and was preparing to shower when she took off her wedding ring and accidentally swallowed it with a handful of vitamins.
Dannah McMichael (pictured here) said she was severely jet-lagged when she accidentally swallowed her wedding ring. (SWNS)
“Without looking, I threw everything in my mouth and washed it down with water,” she said.
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McMichael told Fox News Digital that she immediately started choking, but thought it was the magnesium pills that had gotten caught in her throat.
“When I started choking on the pills and noticed my ring was missing, I knew something was wrong,” she said.
X-ray images show the diamond wedding ring in McMichael’s body. (SWNS)
After looking around the hotel room for the missing ring, the couple joked about the possibility of McMichael swallowing it.
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After two days of searching, the pair went to a local clinic to get an X-ray scan.
“We couldn’t believe it,” McMichael said after seeing her wedding ring on the X-ray machine.
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The woman said she couldn’t stop laughing — saying it was “the funniest thing [to] ever happen to me.”
Dannah McMichael and husband Randy McMichael are pictured on vacation. (SWNS)
McMichael said her husband was relieved, as he thought the massage therapist might have “swiped it” off his wife’s finger.
Doctors at the clinic told McMichael that she would pass the ring naturally — which she confirmed to Fox News Digital did happen.
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“I swallowed it Sunday and passed it Wednesday or Thursday,” she said, adding, “No pain at all.”
McMichael said she was relieved when it came out because she was worried about flushing it down the toilet.
Dannah McMichael, pictured here, accidentally swallowed her wedding ring while on vacation with her husband. (SWNS)
McMichael, who regularly shares her travel adventures on social media, joked after the occasion by posting a video of the X-ray and her ring soaking in disinfectant.
She captioned the post, “Got my ring back. Wait, I never lost it. It was always with me.”
Concerns about bird flu — officially known as avian influenza A (H5) — continue to mount, particularly in California.
As of Oct. 14, the state has had six confirmed and five possible human cases of bird flu, according to the California Department of Public Health (CDPH).
All of the affected individuals reportedly had direct contact with infected cattle at nine dairy farms, the department stated.
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The U.S. Centers for Disease Control and Prevention (CDC) is conducting tests to confirm the five possible cases.
All the individuals experienced “mild symptoms,” including eye redness or discharge (conjunctivitis), the CDPH stated. None were hospitalized.
As of Oct. 14, California has had six confirmed and five possible human cases of bird flu. (iStock)
There is not a concern at this point about human-to-human transmission, according to the agency.
“Given the amount of exposure to infected cows, evidence continues to suggest only animal-to-human spread of the virus in California,” said the CDPH statement.
“Evidence continues to suggest only animal-to-human spread of the virus.”
“Additionally, based on CDC’s genomic sequencing of three California bird flu cases, there is no evidence to suggest an increased ability for the virus to infect or spread between people and no known reduced susceptibility to antiviral medications.”
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As of Oct. 15, there were a total of 20 confirmed human cases of bird flu in the U.S., according to the CDC.
Colorado and California have had the most cases, with others reported in Michigan, Missouri and Texas, the same source stated.
Getting the flu vaccine also makes it less likely that someone will end up with a suspected case of avian flu as a result of having the seasonal flu and a history of animal exposure, an expert said. (Jeff Kowalsky/AFP via Getty Images)
Roughly half of those were linked to exposure to infected cattle and the other half to infected poultry.
“To a large extent, the higher numbers we are seeing in California, and previously in Colorado, are due to more aggressive monitoring and case finding efforts in those states, rather than necessarily reflecting a larger burden of disease,” Shira Doron, M.D., chief infection control officer at Tufts Medicine Health System in Boston, told Fox News Digital.
“Seasonal flu cases will be rising soon, and we will need to distinguish quickly between regular flu and avian flu, especially in animal workers,” an expert noted. (iStock)
“California has one of the more comprehensive programs to find avian influenza in its cattle herds, and when they find sick cows, they monitor exposed health care workers,” she went on.
“The disease has been mostly very mild, so it will only be detected if looked for.”
Should people be concerned?
It’s not known whether the strain that is causing avian flu in cows will ever mutate into a strain that can be spread from human to human, according to Doron.
“Right now, with no evidence of human-to-human spread, it does not have the potential to become a human pandemic, but that could change,” she told Fox News Digital.
“Obviously, scientists and public health officials should be concerned, and should take action to limit the spread of this disease in farm animals.”
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Farm owners and farm workers should also be concerned, she said.
“They should be taking measures to protect those who work closely with animals, especially cows and chickens,” Doron advised.
“It is not time to vaccinate more broadly yet, given the small number of cases, absence of proven human-to-human transmission and mostly mild infection,” said an expert. (iStock)
Sam Scarpino, PhD, director of AI and life sciences at Northeastern University in Boston, said he finds the rising number of human H5N1 cases “concerning.”
“The more spillovers to humans, the more chances there are for the wrong variant to find itself in a person and spark an epidemic,” he told Fox News Digital.
There’s currently no evidence, however, that the virus has mutated to become more infectious in humans, Scarpino said.
“At this point, there’s no excuse for a farm worker to die from an H5N1 infection.”
“Most likely, we are seeing the impact of an increasing number of infected dairy farms leading to an increasing number of human infections,” he said.
“California also has active efforts for both human and dairy cattle surveillance, so ascertainment may be higher than in other states.”
Tips for prevention
Although experts say the risk for human-to-human transmission remains low, they recommend certain public health precautions.
“People who have close contact with animals, particularly farm animals and wild birds, should be taking precautions,” Doron advised.
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The CDC also recommends that farm workers wear personal protective equipment — such as gloves, goggles and face shields — and that farms follow guidance to prevent the spread of the virus between animals.
“Even if a large outbreak isn’t sparked, the risk to farm workers is clearly higher, and we need to ensure they are protected,” Scarpino told Fox News Digital.
“At this point, there’s no excuse for a farm worker to die from an H5N1 infection.”
All of the affected individuals in California reportedly had direct contact with infected cattle at nine dairy farms, the health department stated. (AP Photo/Vadim Ghirda, File)
It’s also important for people to get their seasonal flu shot, experts say.
“While it is not likely to protect against avian flu, it will help people avoid being infected with the seasonal and avian strain at the same time, which can lead to genetic mixing and emergence of a pandemic strain,” said Doron.
Getting the flu vaccine also makes it less likely that someone will end up with a suspected case of avian flu as a result of having the seasonal flu and a history of animal exposure, she added.
Vaccines for bird flu are currently in development.
“It is not time to vaccinate more broadly yet, given the small number of cases, absence of proven human-to-human transmission and mostly mild infection,” said Doron.
Roughly half of the infections were linked to exposure to infected cattle and the other half to infected poultry. (iStock)
It is important for tests to be commercially available for avian flu, however.
“Seasonal flu cases will be rising soon, and we will need to distinguish quickly between regular flu and avian flu, especially in animal workers,” Doron noted.
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“Right now, to test for avian flu, specimens have to go to special public health labs and the results take days to return. We are going to need answers more quickly if we want people to be able to properly isolate and prevent spread.”
The CDC recommends that farm workers wear personal protective equipment — such as gloves, goggles and face shields — and that farms follow guidance to prevent the spread of the virus between animals. (iStock)
The CDPH recommends that California residents monitor for bird flu symptoms for 10 days after exposure.
Those include eye redness (conjunctivitis), sore throat, cough, runny or stuffy nose, vomiting, diarrhea, muscle or body aches, fatigue, headaches, trouble breathing and fever.
For more Health articles, visit www.foxnews.com/health
“If they start to feel sick, they should immediately isolate, notify their local public health department, and work with public health and health care providers to get timely testing and treatment,” the agency advises on its website.
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