VANCOUVER (NEWS1130) – A mother fighting to get funding for a drug that her daughter needs in order to be able to digest food has lost her battle with the province.

Nicole Pallone’s daughter Rosie is four-years-old and suffers from Phenylketonuria (PKU) — a rare, brain-threatening disorder.

Rosie has been on a clinical trial with the drug Kuvan which helps her process amino acids found in most foods. Without it, a simple meal can lead to mental retardation.

Nicole is with the Canadian PKU and Allied Disorders Inc. and feels the government has been leading her on for over a year before coming to the final decision to not help with the drug, which can cost up to $40,000 a year.

“I feel like we were led down the garden path and then beaten over the head with a two-by-four. There’s a lot of patients out there that could be benefiting [from this drug]. It blows my mind that BC is so far behind the rest of the country, which is nothing,” she says.

Nicole says she’s become quite frustrated with the Ministry of Health.

“[I'm] trying to fight for the treatment that my daughter needs and that all PKU patients need. It’s the right thing to do but it’s very frustrating to know that my kids aren’t going to be little very much longer and instead of playing with them and watching them grow, I’m spending my time fighting for access to treatments that we should just have,” she adds.

Only about 150 people have been diagnosed with PKU in BC.