A couple is selling their dream home in a bid to raise funds for a life-saving treatment for their daughter.
Little Tallulah Moon, five, is suffering from a one-in-a-million degenerative brain disease that has left her unable to walk, talk, or sit up on her own.
She was diagnosed with hereditary Spastic Paraplegia Type 56 (SPG56) that causes a person’s abilities to gradually degrade over time, and many do not survive past their 30th birthday.
Chris and Golden Whitrod, from Darwin, Australia, recently found an experimental gene therapy that could ease their daughter’s condition — but it will cost $3million to manufacture before it can be administered to her during a clinical trial.
The parents are having to raise the funds because their daughter’s disease is so rare that pharmaceutical companies are not prepared to invest in a potential cure.
Tallulah Moon, now aged five years old, is pictured above. She was diagnosed with genetic disease SPG56 at the age of 18 months. It has left her unable to walk, talk or even sit up and lift her arms above her head
The family, after falling short of their fundraising goal, is now selling the family home in Darwin, Australia, to cover medical costs for a potential treatment (House pictured above)
Mrs Whitrod said: ‘This has been a hugely emotional experience.
‘But we have to play with the cards we’ve been dealt, so we’ve changed dreams from having the dream home to having our family together.’
She added to Fox News: ‘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.
‘But in the end, we realized that’s our last asset that we have, and that could help us get to the finish line.’
Mrs Whitrod said Tallulah had been like any other healthy baby for the first year of her life, learning to walk, talk and hitting all the milestones at the same time as others.
But when she turned 14 months, her progress suddenly went into reverse.
Mrs Whitrod told Fox News: ‘We’d gone from watching this beautiful child thrive at 14 months, to regressing to the abilities of a four-month-old.
‘I remember her looking at us as if to say, “Why can’t you help me?” And I could feel that as a parent, I just didn’t know what to do.’
She was diagnosed with the genetic condition in August 2020, which is medically termed Hereditary Spastic Paraplegia Type 56.
The condition stems from a mutation on the CYP2U1 gene, which causes a mutation in an enzyme that breaks down fatty acids in nerve cells mostly in the brain.
This results in the build up of fatty acids to built up and disrupts communication between cells, leading to the debilitating symptoms.
Tallulah is pictured center with her mother Golden, her father Chris, and her older brother Finn who is eight years old. The parents had hoped to use the house to raise their children
Tallulah is shown above with her parents. Her mother described her daughter as looking at her parents as if to ask why they weren’t able to help her
The condition is normally diagnosed around the age of one or two years and gets worse over time.
Mrs Whitrod said that when her daughter was diagnosed she was told there was ‘nothing’ that could be done and that she should ‘just love her daughter’.
But then she 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 had been to use the house, which also has a spa and is on a block with harbor views, as the place to raise their daughter and son Finn, now eight.
But they have now moved out, initially turning the home — which has two self-contained apartments downstairs — into an Airbnb rental before deciding to put it up for auction.
Shown above is one of the property’s bedrooms
A gene therapy is a medical treatment that aims to correct or replace faulty genes, which often uses viruses injected into patients to transport the correct gene to the faulty cells.
There are few treatments available for the 30million people in the US with a rare disease, mostly genetic, because of the costs around treatments.
The World Health Organization estimated in 2022 that it cost $4.2billion to bring a drug to market, making treatments for many of these conditions financially unsustainable for companies.
Campaigners have called for tax breaks to encourage more research into rare diseases, or have tax profits for drugs go directly to a fund for rare disease research.
But in the meantime, this has led to many families going to drastic lengths to found treatments for their children.
Ms Whitrod said: ‘We’re standing at the precipice of there being a treatment for Tallulah and for children in her position.
‘We feel like we’re almost there. But, of course, $3million for a little Aussie family is quite a lot.’
The house went up for auction this week, with the results yet to be announced.
