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

A household successful Queensland, Australia, is faced with selling their imagination location to rise wealth for their daughter’s life-saving therapy.

Tallulah Moon, 5, has been diagnosed with SPG56, a degenerative encephalon illness that is caused by a uncommon gene mutation.

Tallulah was a healthy, blessed babe until soon aft her archetypal birthday, erstwhile she abruptly began to suffer her centrifugal skills.

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"She was hitting each of her milestones, and past abruptly she experienced a truly steep regression — her abilities benignant of fell similar an avalanche disconnected 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 highly uncommon neurodegenerative illness that worsens implicit time. Her mother, Golden Whitrod (right) is committed to uncovering and backing the familial therapy to prevention her daughter. (Our Moon’s Mission/Golden Whitrod; Sara Climie Photography)

"She went from a small miss who was walking and talking to abruptly not adjacent being capable to beryllium up connected her own, not being capable to assistance her arms supra her shoulders oregon clasp up her neck," Whitrod said.

Swallowing and choking besides became a concern.

"We'd gone from watching this beauteous kid thrive astatine 14 months, to regressing to the abilities of a 4-month-old," Whitrod recalled.

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Tallulah Moon was besides terrified, incapable to comprehend the nonaccomplishment of her abilities.

"I retrieve her looking astatine america arsenic if to say, ‘Why can't you assistance me?’" her parent said. "And I could consciousness that as a parent. I conscionable didn't cognize what to do." 

A devastating diagnosis

At first, Whitrod hoped determination would beryllium an casual hole for immoderate was causing Tallulah's decline.

After six months of investigating and scans, doctors performed a familial survey known arsenic full genome sequencing (WGS), starring to Tallulah Moon’s diagnosis of SPG56 successful August 2020.

Tallulah Moon, past property 3, is pictured astatine the family's location successful Darwin, Australia, which the household has enactment up for merchantability to money their ngo to cure their girl of SPG56. (Our Moon’s Mission/Golden Whitrod)

SPG56 is simply a benignant of hereditary spastic paraplegia (HSP) that usually begins astir property 1 oregon 2 and worsens implicit time, causing musculus weakness and gradually robbing children of the quality to walk, talk, basal and beryllium up, arsenic seen successful past cases.

In aboriginal stages, the illness tin origin cognitive decline, seizures and adjacent an inability to swallow.

SPG56 is 1 of the rarest types of HSP, affecting less than 1 successful each cardinal children, statistic show.

"We'd gone from watching this beauteous kid thrive astatine 14 months, to regressing to the abilities of a 4-month-old."

There is presently nary cure for the disease.

"The doctors told us, ‘just emotion your baby,’" Whitrod said. "They said determination was thing they could bash — that determination were nary treatments."

A mother’s determination

After "coming retired of the fog" post-diagnosis, Whitrod immersed herself successful research, making connections with different families whose children were besides surviving with uncommon familial diseases.

One of those was Terry Pirovolakis, a Canadian begetter whose son was diagnosed with SGP50, a illness that is precise akin to Tallulah Moon’s SPG56.

Pirovolakis instantly started researching to find a cistron therapy that could assistance his son.

Whitrod (at left) met with scientists astatine familial institutes and cautiously built her ain probe team. (Our Moon’s Mission/Golden Whitrod)

After gathering with experts from astir the world, helium liquidated his beingness savings and paid a squad of researchers to commencement processing the therapy. In 2022, aft monolithic fundraising efforts, his lad received the one-time treatment, which halted progression of the disease.

Following Pirovolakis’ lead, Whitrod met with scientists astatine familial institutes and cautiously built her ain probe team.

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Over a three-year period, the squad created an experimental cistron therapy for SPG56, which Whitrod calls a "massive win."

The adjacent measurement is for the therapy to spell done objective trials to marque definite it's harmless and effectual for the children who request it — but the outgo is excessively precocious for the immense bulk of families to cover.

It volition necessitate a staggering $3 cardinal to manufacture the medication earlier it tin beryllium administered to Tallulah Moon successful a objective trial, according to Whitrod.

Chris (left), Finn (top), Golden and Tallulah Moon enjoyed a time astatine the formation connected International Rare Disease Day 2023. (Our Moon’s Mission/Golden Whitrod)

"Unfortunately, the large pharmaceutical companies conscionable aren't funny successful backing the probe for these uncommon diseases, adjacent though the treatments are possible," she said.

"We realized that we person to money this connected our ain if we privation to bash this."

Parents Golden and Chris Whitrod with girl Tallulah Moon, 5, who lives with the neurodegenerative illness SPG56 (Sara Climie Photography)

Walter Gaman, MD, laminitis of Executive Medicine of Texas, emphasized the fiscal load that often comes with uncommon diseases.  

"Rare diseases, by nature, relationship for a tiny marketplace share, meaning that determination are fewer customers to sorb the outgo of bringing effectual drugs to market," Gaman, who is not affiliated with the Whitrod family, told Fox News Digital. 

"We realized that we person to money this connected our ain if we privation to bash this."

In 2003, Deloitte reported that the mean outgo of bringing a cause to marketplace exceeded $2 billion, according to Gaman. 

"One of the astir important wins for orphan drugs came successful 2017, erstwhile President Trump signed the Food and Drug Administration Reauthorization Act (FDARA) into law," helium noted. 

"This was a immense triumph for orphan therapies due to the fact that it expanded the FDA Rare Disease Program and besides expedited the reappraisal process. As a result, 2018 saw a grounds 59 orphan drugs greenlighted. We request to physique that momentum up erstwhile again."

 In 2003, the mean outgo of bringing a cause to marketplace exceeded $2 billion.

There is inactive a batch of enactment to do, helium noted. 

"We request to bring orphan drugs to market, but we besides request to look astatine ways of making these drugs much affordable to the extremity user," Gaman said. 

Some imaginable ideas are to connection taxation breaks to companies that champion specified drugs, oregon to person a taxation connected pharmaceutical companies that goes straight to the FDA Rare Disease Program, helium suggested.

A ‘much bigger dream’

"We're lasting astatine the precipice of determination being a attraction for Tallulah and for children successful her position," Whitrod said. 

"We consciousness similar we're astir there. But, of course, $3 cardinal for a small Aussie household is rather a lot."

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The Whitrods person launched a charitable instauration called Genetic Cures for Kids, with a fundraising inaugural called Our Moon’s Mission.

The household has raised immoderate funds done donations, but it’s lone a fraction of what is needed to dainty Tallulah Moon — hence their determination to sell their home. 

The house, which is located successful the suburb of Stuart Park, is scheduled to spell up for auction this week.

Golden Whitrod (left), parent of Tallulah Moon, has built a probe squad to place the medicine for her daughter's familial disorder. (Our Moon’s Mission/Golden Whitrod)

"We'd hoped that immoderate occurrence would hap and we wouldn't request to merchantability it, and that assistance would travel earlier we needed to travel to this crunch point," Whitrod said. 

"But successful the end, we realized that's our past plus that we have, and that could assistance america get to the decorativeness line."

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While they are sacrificing their family’s "dream home," Whitrod says they are present aspiring to a "much bigger dream."

"That is to springiness Tallulah the beingness she deserves — and we're each successful for that."

While she is intent connected redeeming her daughter, Whitrod has besides acceptable her sights connected a wider extremity — to assistance different families whose children are facing akin challenges. (Sara Climie Photography)

Meanwhile, Whitrod said, Tallulah Moon is moving to combat the neurodegenerative disease done physiotherapy, occupational therapy and code therapy.

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While she is intent connected redeeming her daughter, Whitrod has besides acceptable her sights connected a wider extremity — to assistance different families whose children are facing akin challenges.

Golden Whitrod is pictured with her daughter, Tallulah Moon, a 5-year aged surviving with the uncommon neurodegenerative illness SPG56. (Sara Climie Photography)

"What we're creating is not conscionable a attraction for Tallulah that ends with the kids with SPG56 — we’re creating a replicable framework, truthful the researchers tin spell connected to make treatments for different similar diseases," she said.

"If we tin get determination successful time, past we tin assistance Tallulah unrecorded the life she deserves — and not conscionable her, but besides tons of children conscionable similar her."