A BENALLA mother whose two sons suffer from a rare terminal illness is determined not to let her boys “die without a fight”.
Mandy Jacobs has organised a battle of the bands to raise funds for medical treatment for her sons Tim and Matt Lloyd who both have Niemann-Pick disease type C.
A rare inherited disease which affects about one in 150,000 people, Niemann-Pick affects the body’s ability to metabolise cholesterol, causing it to build-up on the brain and cause dysfunction, and ultimately kill cells in the organ.
There is no cure for the progressive disease.
Tim, 19, was diagnosed with the disease in April and Matt in September, just 10 days after his 21st birthday.
Mrs Jacobs said the battle of the bands on Saturday would raise funds for treatment, such as speech and physiotherapy, and an expensive trial drug the boys take in the hope of slowing the progression of the disease.
But she said the event, held by the Benalla Trust Foundation, was also about raising awareness.
“Unless we have awareness we’re not going to get the people behind us to research treatment and a cure and fight medication costs,” she said.
“I’m not going to be told my kids are going to die without a fight.”
As a result of the disease Tim and Matt have enlarged spleens, difficulty swallowing liquid and memory and speech problems.
Tim’s walking has deteriorated and Matt has started to walk with a gait and has difficulty controlling his emotions.
Mrs Jacobs fears other symptoms, such as seizures and dementia, will follow.
Tim, a music lover and keen guitarist, said while the disability got him down at times, it was more frustrating to find that people didn’t know about Niemann-Pick.
The battle of the bands, called A Night of Rock Heroes, will see performers fight for a chance to record a single at a professional studio in Melbourne.
Monique Brumby and The Flash Mob will play at the Commercial Hotel event and Tim will take to the stage to sing his song, Hero, with Brumby on guitar.
CDs with the song and another original Tim recorded with Brumby, Is He Ugly?, will be for sale for $10.
The event starts at 7pm, with tickets available from the hotel or at the door for $20.
