‘It’s love that drives us’: The $1 million race to cure a little girl’s nameless disease
Little Sasha has a disease so rare it doesn’t even have a name.
As a toddler, she was a happy, energetic girl who loved rainbows, princesses, and riding her scooter.
Little Sasha has a disease so rare it doesn’t even have a name. A Current Affair
But by age four, everything changed.
A glitch in Sasha’s DNA – just one wrong letter out of 4 billion – began stripping away every milestone she had worked so hard to achieve.
Within a year, the chatty four-year-old was left non-verbal, reliant on nappies, and completely dependent on her parents for basic care.
Doctors told Nadine and David there was no treatment and no cure.
Unwilling to watch their daughter fade away, the couple took matters into their own hands.
Through grassroots fundraising, community raffles, and donations from everyday Australians, Nadine and David initially raised $250,000 to recruit a world-class team of scientists.
The project now stands agonisingly close to fruition, requiring $1 million to complete safety testing before Sasha can become patient number one.
Doctors told Nadine and David there was no treatment and no cure. Unwilling to watch their daughter fade away, the couple took matters into their own hands. A Current Affair
If successful, the treatment will not only give Sasha a chance at recovery, but the underlying genetic technology could also be replicated to cure other children facing rare genetic conditions worldwide.
“Sasha only needs five words,” David told A Current Affair.
“If she could just tell us hungry, thirsty, hot, ouchy ... it wouldn’t take many words to completely change her life.”
The Lipworths remain resolute as they fight to secure the final funding needed for trial.
“I would like to think that any parent would do what we’ve done,” Nadine said.
“Because if you watch your child being taken away like that ... it’s love that drives us.”
To support the family’s mission to fund the trial, visit savingsasha.org.
We’d love to hear from you
