Tragic reason: Couple sells their $3 million dream home

A couple sells their $3 million dream home to raise money for life-saving treatment for their daughter.

Little Tallulah Moon, five, suffers from a one-in-a-million degenerative brain disease that leaves her unable to walk, talk or sit on her own.

She was diagnosed with hereditary spastic paraplegia type 56 (SPG56), which causes a person’s abilities to gradually deteriorate over time and many people do not survive their 30th birthday.

Chris and Golden Whitrod from Darwin, Australia recently found one experimental gene therapy that could ease her daughter’s condition – but it will cost $3 million to produce before it can be given to her as part of a clinical trial.

The parents have to raise the funds because their daughter’s disease is so rare that pharmaceutical companies are unwilling to invest in a possible cure.

After failing to reach their fundraising goal, the family is now selling the family home in Darwin, Australia to cover medical costs for possible treatment (house pictured above).

Ms Whitrod said: “It was an extremely emotional experience.”

“But we have to play with the cards we’ve been dealt, so we changed our dreams from a dream home to living together as a family.”

She added to Fox News: “We were hoping that a miracle would happen and we wouldn’t have to sell it, and that help would come before we had to get to this critical point.”

“But in the end we realized this is the last asset we have and this could help us get to the finish line.”

Ms Whitrod said Tallulah was like any other healthy baby for the first year of her life, learning to walk and talk and reaching all milestones at the same time as others.

But when she was 14 months old, her progress suddenly reversed.

Ms Whitrod told Fox News: “We went from watching this beautiful child thrive at 14 months to developing into the skills of a four-month-old.”

“I remember she looked at us as if to say, ‘Why can’t you help me?’ And I could sense that as a parent I just didn’t know what to do.”

In August 2020, she was diagnosed with the genetic condition medically known as hereditary spastic paraplegia type 56.

The disease is due to a mutation in the CYP2U1 gene, which causes a mutation in an enzyme that breaks down fatty acids in nerve cells, mainly in the brain.

This leads to the buildup of fatty acids and disrupts communication between cells, leading to debilitating symptoms.

Tallulah is pictured at center with her mother Golden, father Chris and older brother Finn, who is eight years old. The parents had hoped to use the house to raise their children

Tallulah is pictured above with her parents. Her mother described her daughter looking at her parents as if to ask why they couldn’t help her

The condition is usually diagnosed between one and two years of age and worsens over time.

Ms Whitrod said when her daughter was diagnosed she was told “nothing” could be done and to “just love her daughter”.

But then she heard the story of Terry Pirovolakis, a Canadian father who liquidated his savings to develop a treatment for his son, who suffers from SGP50 – similar to Tallulah.

In response, she founded her own research team, which then spent three years developing 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 Ms Whitrod was “heavily pregnant”.

One of the renovations even included a mini spa pool for relaxation and recreation.

The plan was to use the house, which also has a spa and sits on a block overlooking the harbor, as a place to raise their now eight-year-old daughter and son Finn.

However, they have since moved out and initially converted the house – which has two self-contained apartments on the ground floor – into an Airbnb rental before deciding to put it up for auction.

Pictured above is one of the property’s bedrooms

Gene therapy is a medical treatment that aims to correct or replace faulty genes. Viruses injected into patients are often used to transport the correct gene to the faulty cells.

For the 30 million people in the United States who suffer from a rare disease, most of which is genetic, there are few treatment options available because of the costs associated with treatments.

The World Health Organization estimated in 2022 that it cost $4.2 billion to bring a drug to market, making treating many of these conditions financially prohibitive for companies.

Activists have called for tax breaks to encourage more research into rare diseases or for drug tax profits to go directly into a rare disease research fund.

However, this has now led to many families going to drastic lengths to find treatment for their children.

Ms Whitrod said: “We are on the precipice of treatment for Tallulah and the children in her position.”

“We feel like we’re almost there.” But of course $3 million is a lot for a small Australian family.”

The house went up for auction this week, with results yet to be announced.