Two-Year-Old Diagnosed With Ultra-Rare Disease – Parents Fight for a Miracle
A two-year-old girl from Melbourne, Australia, has been diagnosed with an ultra-rare genetic disease that has left her parents devastated. Mila Taylor is one of just 150 people worldwide to be diagnosed with Infantile Neuroaxonal Dystrophy (INAD), a neurological disorder that has no known cure or treatment.
Mila’s parents, Stephanie, 29, and Andrew, 32, had an easy pregnancy and a healthy baby at birth. But when Mila turned eight months old, they started noticing she wasn’t reaching typical milestones like crawling. Despite being reassured by their GP, the couple felt something was wrong and continued pushing for answers.
It wasn’t until February of this year, after multiple tests, including an MRI, blood test, and genetic screening, that they received the heart-wrenching diagnosis of INAD, reported the Mirror.
“The news was earth-shattering,” Stephanie said. “I knew something was wrong, but I could never have expected this. When I asked the doctor if there was hope, she said, ‘Prepare for the worst, but always hope for the best.'” The doctors have given Mila a life expectancy of just five to 10 years. “Our biggest concern now is trying to delay the progression of this disease as much as possible,” said Stephanie.
Despite having no complications during her pregnancy, Mila’s developmental delays became more apparent as she got older. By the age of one, Mila wasn’t speaking or standing, which led the parents to seek help from specialists. After several visits to doctors and tests, they were told she might have a global developmental delay. However, when Mila still wasn’t standing or speaking at 18 months, they sought further advice, eventually pushing for genetic testing.
On February 1, the results came back, confirming Mila’s diagnosis with INAD. “Andrew broke down into tears, and I was in shock,” Stephanie recalled. “The geneticist said there’s nothing out there at the moment to help her.” The family was left devastated but has refused to give up, reaching out to medical experts worldwide in the hope of finding treatment.
To support Mila and help fund research into INAD, the family launched a GoFundMe page, which has raised over $107,000 (£52,380) so far. “At the moment, any trials or treatment are overseas – there’s nothing in Australia,” Stephanie explained. “This isn’t just about our child; there are other children out there with this disease.”
Despite the challenges, Andrew remains determined. “It’s been difficult, but we are doing everything we can. If anyone can help, we are open to it.” The Taylor family’s fight for Mila is far from over, and their courage in the face of such a devastating diagnosis is nothing short of inspiring.
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