But the trip won’t come cheap, and the Dubbo community is stepping up to help.

Jesse, Ernie and Trevor Tink are well-known around Dubbo, mainly through cricket, rugby league and lawn bowls.

Until the past few days only their inner circle of family and close friends knew the boys, all in their 30s, were battling Atypical PKAN, a degenerative disease of the brain accompanied by an excess of iron.

In May the brothers and other family members will head to Chicago to visit leading specialist Dr Susan Hayflick.

“We need to go, not to find a cure because there isn’t one yet, but to explore ways we can have a better quality of life,” Trevor Tink said.

“It’s going to cost our family at least $65,000 for the trip but since we put it out there only a couple of days ago the support has been so overwhelming.”

A GoFundMe page has been set up to help with the cost of the trip, while the Castlereagh Hotel Clydesdales social club has organised a bowls day at Sporties on April 22 to assist further.

Such is the rare nature of the disease it is believed that it affects one in three million people worldwide, but in this case has impacted on three people in one family.

“It’s so rare and not much is known about it, but what we do know is that it will eventually wear us down, it’s just a matter of how long that takes,” Trevor said.

“We’ve kept this a secret for so long but since it came out, it actually feels like a big weight lifted off us and people have been great and so willing to help however they can.”

For information on the bowls day contact the Castlereagh Hotel, while donations can be made at www.gofundme.com/tink-boys-fight-against-pkan

PKAN or Pantothenate Kinase-Associated Neurodegeneration, is the most common form of NBIA.

Between 35 and 50 percent of the NBIA population has PKAN.

It is caused by mutations in the PANK2 gene. This gene provides the instruction for making an enzyme called pantothenate kinase. Researchers are investigating how this missing enzyme damages nerve cells in the brain and causes iron to build up.

There are two forms of PKAN: classic and atypical, although some people have symptoms that place them in between the two categories.

The atypical form of PKAN, which the Tink brothers have, usually occurs after age 10 and within the first three decades of life. The average age for developing symptoms is 13. The disease progresses more slowly than classic PKAN and generally is less severe.

The symptoms vary from case to case and are more different than those of early-onset disease. The inability to walk typically occurs 15 to 40 years after symptoms develop. Speech is affected early on. Common speech problems are repeating words or phrases (palilalia), rapid speech (tachylalia) and slurring words (dysarthria).

Psychiatric symptoms are more commonly observed in atypical PKAN and can include impulsive behavior, violent outbursts, depression and rapid mood swings.

Movement problems are common, although they develop later. Patients often are described as having been clumsy in childhood and adolescence. Similar to Parkinson’s disease, “freezing” while walking may occur, especially when turning a corner or encountering surface variations. Shaking or tremors also have been reported.