Julia Vitarello and her family lived an outdoor life against the backdrop of the Rocky Mountains in Colorado. Her daughter Mila was adventurous. She was skiing at the age of two and could hike for hours in her tiny hiking boots.
But at the age of about three and a half, Mila started to lose her agility, became clumsy and was often covered in bruises. Her mother became increasingly scared and nervous as problems with her co-ordination, speech and vision emerged.
Mila went to a hundred different medical and therapy appointments but was told she would grow out of her conditions. Julia was told she was crazy.
Yet it wasn’t until they ended up in a busy emergency room in Colorado in 2016, when Mila was six, that doctors noticed her condition was serious. Within a week Julia received a diagnosis that would chill the heart of every parent. She had a neurological condition called Batten’s disease – a rare and fatal genetic disorder.
Batten disease is a cruel thief of children’s lives. It progressively robs them of their vision, speech, and movement, leading to an early death. Julia set out to raise millions of dollars in the faint hope of finding a gene therapy could treat her daughter.
