“There is no other way to put it – my daughter is dying”.
Six-year-old Mila was diagnosed with Batten disease after years of slowly losing the ability to walk, speak and even see.
The extremely rare neurodegenerative disorder can leave its sufferers bedridden, blind and at risk of seizures.
Mila is one of those people and her parents fear she won’t survive past 10 years of age.
“I lie by her side every night when she sleeps and my heart bleeds. My face burns from the tears,” reads the description on the family’s GoFundMe page.
“Mila could be your child. She splashed in the pool, begged for chocolate ice cream, and sang her favourite songs. She rode bikes. She skied.
“But at four years old, she started to fall over, to bump into things.
“She was finally diagnosed with Batten Disease, a rare genetic condition that robs normal children of everything. They end up bedridden, on a feeding tube, with seizures, and cognitively impaired. There is no cure.
“They end up bedridden, on a feeding tube, with seizures, and cognitively impaired. There is no cure.
“There is no cure.”
However, recently, Mila’s parents have found a gene therapy that they say has stopped and even reversed the disease in many cases.
The family raised $1million to get the gene therapy trial put together but now need another $1million by September or “hope is lost for Mila and all children like her”.
The family raised $1million to get the gene therapy trial put together but now need another $1million by September or “hope is lost for Mila and all children like her”.
“The path to a cure exists. We’re racing against time and money is our only barrier.”
The family has so far raised $52,290 of their $1M target and is pleading for public support.
