'We need YOUR support to live with NF'

A Leaving Cert student who suffers from a rare genetic condition that causes tumours to develop on nerves is undertaking a school project way above the ordinary - in organising a ball at the Listowel Arms Hotel to raise awareness of the plight of everyone fighting the disorder.

17-year-old Athea student Shannon Brady is calling on everyone to come out in support of the NF Association Charity Ball, taking place in the Arms on November 18 next with special guest Michael Healy Rae.

Shannon had the idea for the big night as she approached a daunting project challenge as part of the Leaving Cert Applied programme at her school, Coláiste Íde agus Iosaef in Abbeyfeale.

Shannon suffers from the rare genetic condition Neurofibromatosis or NF as it commonly known, a condition that causes tumours to grow in various types of nerves affecting the development of tissues like skin and bone.

"I have three tumours, one on each optic nerve and another right at the centre of my brain," Shannon told The Kerryman this week as she got the word out about the event.

"All the tumours are benign. Luckily my sight isn't affected too badly by the tumours on the optic nerves but they can't be operated on for fear of damaging the nerves.

"It's the same with the benign tumour in my brain, it can't be operated on as it is too deep. I get headaches but other than that I'm doing okay at the moment," the brave young woman said.

Shannon is now off medication, but requires regular MRI scans to monitor the growths. Thankfully, with none showing signs of rapid development, her MRI scans have become a biennial rather than annual event as they were until last year.

Now, Shannon is calling on a host of friends to help her prepare for what's certain to be a massive night. Michael Healy Rae is on board as special guest and a world famous MMA (mixed-martial arts) coach John Kavanagh is also lending his support. John launched the NF Fighter campaign earlier this year - establish to recognise everyone fighting hard with NF or on behalf of those living with the condition.

"It can be anyone, either someone who has NF or family or friends who are working hard to help them.

"The worst thing about NF for me is the uncertainty of it, I don't know how it's going to develop. There are roughly 2,500 of us with the condition in Ireland and we need as much support as we can get," Shannon said.

"That's why the NF Fighter awards were set up and I'm delighted to say they will be announced on the night in the Arms," Shannon added.

Head of the NF Association of Ireland Gareth Curran paid glowing tribute to Shannon for all her hard work in organising the night.

"Shannon knows first-hand how difficult it can be to live with NF and we are thrilled she is helping us raise awareness and vital funds to help us support others like her," Mr Curran said, adding:

"We launched the really positive NF Fighter campaign at the start of the summer to celebrate and support those who live with NF, and are so thrilled to be announcing the winners of the NF Fighter awards at this special event."