Hamish loves nothing more than riding his motorbike and pushbike, playing cricket, shooting targets with his bow and arrow, swimming, and watching AFL football (a passionate Magpie supporter). But behind his big smile Hamish faces a frighteningly uncertain future as dozens of internal tumours grow throughout his body.

Hamish was suspected of having NF1 at six months old after the appearance of several café-au-lait spots. His diagnosis was confirmed when then two-and-a-half year-old Hamish underwent an eye examination that revealed Lisch nodules on his optic nerve.

“When Hamish was suspected of having NF1, of course we Googled it,” says Hamish’s mum, Libby. “Both my husband Duncan and I hadn’t heard of it and there was no history of it in either of our families. We were given some details in an information booklet on the many things that could happen, but NF affects each individual so differently. As any parent we were worried about what would come next.”

Others diagnosed with NF may experience the growth of confronting exterior tumours, but for adults and children like Hamish, the growth of tumours inside the body are the most debilitating as they interfere with vital organs and bodily functions.

Hamish has a large amount of neurofibromas (tumours) growing throughout his spine, spinal cord, and pelvic area. Hamish was being monitored at the Outreach Clinics in Orange through The Children’s Hospital at Westmead until 2010, and has since been traveling five hours to Sydney every three months with his parents for regular scans and monitoring of his tumours.

“We take each check-up one visit at a time,” says Libby.

Unfortunately, due to the complex nature of the tumours, any operation to remove them would pose too many risks and complications for Hamish.

 “The outcome of surgery would probably be just as bad, if not worse, than if the tumours were to just grow,” says Duncan.

The family is currently hoping to be placed on a clinical trial for a drug to stop the tumours from growing and causing any further damage.

“Our hope is for a drug to shrink these tumours or at least hold them steady before he loses function in his arms or legs. There is nothing we can do but hope for a cure,” says Libby.

Hamish also suffers from progressive lower limb weakness, osteoporosis, and significant learning difficulties, which affects 50 per-cent of children diagnosed with NF.

Hamish may have a rough road ahead, but he is a kind-hearted, extraordinary young boy who certainly isn’t one to let his battles dampen his spirits.

“Hamish is a beautiful, cheeky and caring kid with a contagious smile and a great sense of humour,” says Libby. “He’s been great throughout it all. We’re really lucky.”