A STRATHFIELDSAYE family is trying to form a support group for sufferers of a hereditary disease that has afflicted their son.

Kate and Andrew Hay struggled to find support for their 10-year-old son, Charlie, who was diagnosed with neurofibromatosis (NF) 18 months ago.

The condition is characterised by the growth of benign tumours called neurofibromas.

Neurofibromas can grow anywhere in an NF sufferer including just under the skin, spine or brain.

“Charlie was having a tough time at school and found it hard to concentrate despite being well behaved, according to his teachers at St Francis of the Fields Primary,” Mrs Hay said.

After being misdiagnosed several times with attention-deficit disorder, Charlie was taken to a paediatrician in Melbourne and diagnosed with NF Type 1.

Charlie underwent surgery to remove a benign tumour in his lower back last year.

He will now have to undergo full-body MRI scans every six months and make regular visits to the doctor to monitor any future tumours for the rest of his life.

Since being diagnosed, Charlie’s school teachers have been able to structure his classes more effectively and take into account his condition.

Charlie is now making leaps and bounds at school and has an interest in acting and playing professional baseball.

Mr Hay said the school had been a huge help and hoped others living with NF could find help through the creation of a support group.

“We found it very difficult to find any local information or experts in NF and found the only support network was based in Sydney,” he said.

The Hay family found more information from the US where annual programs such as camps and activities were organised to bring people with NF together.

Actor Gillian Anderson (The X-Files) has a family history of the condition and has successfully created awareness for NF throughout the US.

NF is one of the most common genetic conditions and can affect anyone, regardless of family his

tory, race or gender. There are three types of NF - types 1 and 2 and schwannomatosis. NF1 affects about one in every 3000-4000 individuals.

NF2 and schwannomatosis affect one in every 35,000-40,000. In NF1, neurofibromas commonly grow on the skin or on the optic nerve, which can result in blindness.

Mrs Hay can be contacted at katehay4@bigpond.com