A couple is selling their $3 million dream home in a bid to raise funds for life-saving treatment for their daughter.
Five-year-old Tallulah Moon suffers from a one-in-a-million degenerative brain disease that leaves her unable to walk, talk or sit up on her own.
He was diagnosed with hereditary spastic paraplegia type 56 (SPG56), which causes a person’s abilities to gradually degrade over time and many do not survive beyond the age of 30.
Chris and Golden Whitrod, from Darwin, Australia, recently found a experimental gene therapy that could alleviate his daughter’s condition, but will cost $3 million to manufacture before it can be administered to her during a clinical trial.
The parents have to raise funds because their daughter’s disease is so rare that pharmaceutical companies are unwilling to invest in a possible cure.
Tallulah Moon, now five years old, is pictured above. He was diagnosed with the genetic disease SPG56 at the age of 18 months. It has left her unable to walk, talk or even sit and raise her arms above her head.
The family, after missing their fundraising goal, is now selling the family home in Darwin, Australia, to cover medical costs for possible treatment (House pictured above).
Mrs Whitrod said: ‘This has been a hugely emotional experience.
“But we have to play with the cards we have been dealt, that is why we have changed our dreams from having our dream house to having our family together.”
she added to Fox News: “We were hoping that some miracle would happen and we wouldn’t need to sell it, and that help would come before we needed to get to this critical point.”
“But in the end we realized that this is the last asset we have that could help us reach the goal.”
Mrs Whitrod said Tallulah had been like any other healthy baby for the first year of her life, learning to walk, talk and reach all the milestones at the same time as everyone else.
But when he turned 14 months old, his progress suddenly reversed.
Mrs Whitrod told Fox News: “We had gone from seeing this beautiful child thriving at 14 months to returning to the skills of a four-month-old.”
‘I remember her looking at us like, “Why can’t you help me?” And I could sense that, as a parent, I just didn’t know what to do.”
He was diagnosed with the genetic condition in August 2020, which is medically called hereditary spastic paraplegia type 56.
The condition is due to a mutation in the CYP2U1 gene, which causes a mutation in an enzyme that breaks down fatty acids in nerve cells, primarily in the brain.
This results in the buildup of fatty acids and disrupts communication between cells, causing debilitating symptoms.
Tallulah appears in the center with her mother Golden, her father Chris and her older brother Finn, who is eight years old. The parents hoped to use the house to raise their children.
Tallulah is shown above with her parents. Her mother described her daughter looking at her parents as if asking why they couldn’t help her.
The condition is typically diagnosed around one to two years of age and worsens over time.
Mrs Whitrod said that when her daughter was diagnosed she was told that “there was nothing that could be done” and that she should “just love her daughter”.
But then he heard the story of Terry Pirovolakis, a Canadian father who liquidated his life savings to develop a therapy for his son, who suffers from SGP50, similar to Tallulah’s condition.
In response, she founded her own research team, which then spent three years developing the experimental gene therapy for her daughter.
The couple bought the property before 2015 and spent years renovating it together, adding new bathrooms and kitchens, even when Mrs Whitrod was “hugely pregnant”.
In one of the renovations, they even installed a mini spa pool for rest and recovery.
The plan was to use the house, which also has a spa and is on a block overlooking the harbour, as the place to raise her daughter and son Finn, now eight.
But now they have moved on, initially converting the house, which has two separate apartments on the ground floor, into an Airbnb rental before deciding to put it up for auction.
Shown above is one of the bedrooms on the property.
A gene therapy is a medical treatment that aims to correct or replace defective genes, often using viruses injected into patients to carry the correct gene into the defective cells.
There are few treatments available for the 30 million people in the United States who suffer from a rare, mostly genetic disease, because of the costs of the treatments.
The World Health Organization estimated in 2022 that it cost $4.2 billion to bring a drug to market, making treatments for many of these conditions financially unsustainable for companies.
Activists have called for tax breaks to encourage more research into rare diseases, or for tax profits from drugs to go directly into a fund for rare disease research.
But in the meantime, this has led many families to take drastic measures to find treatments for their children.
Mrs Whitrod said: “We are on the precipice of there being treatment for Tallulah and for children in her situation.”
‘We feel like we’re almost there. But of course $3 million for a small Australian family is quite a lot.”
The house went up for auction this week and the results have not yet been announced.
