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Walk for awareness

Friday, 6th June, 2014

Belinda and Aaron Day with their son Jamie (4) who was recently diagnosed with Neurofibromatosis 1. Belinda and Aaron Day with their son Jamie (4) who was recently diagnosed with Neurofibromatosis 1.

By Emily Roberts

When Belinda and Aaron Day found out their son Jamie was diagnosed with Neurofibromatosis 1, they felt alone.

But when they read about an awareness walk organised by Mia Lawrence, they felt they had access to more support.

The Lawrence family at Nine Mile Station are holding an awareness walk for Neurofibromatosis Awareness Month.

They are doing it to raise awareness for their nephew and cousin Hamish Neville.

But also to raise funds for the Children’s Tumour Foundation of Australia, a non-profit organisation that provides support for families and promotes research to find a cure for NF.

NF1 is a syndrome. This means it is a condition with a number of features that often occur together. NF1 has a wide range of severity and many people with the condition will only be mildly affected. For most people, NF1 does not significantly affect their health. For a few others, NF1 can cause major health problems at certain stages of their lives. 

NF1 symptoms include cafe-au-lait patches, Lisch nodules, neurofibromas, plexiform neurofibromas, learning difficulties, bone problems and a cancer risk. 

The major feature of NF2 is the development of swellings (non-cancerous tumours) on the nerves that control hearing and balance (the auditory and vestibular nerves). 

The first local walk was held in the city last year.

Belinda and Aaron found out last year about their son.

“We found out last year, that he might possibly have it,” Belinda said.

“It was quite scary because, we had never heard of it before.

“We felt really alone. It wasn’t until Mia posted about the awareness walk (last year) that we realised there were other people in town affected by it.

“Mia was able to put us in touch with other families. That was life changing - we have received so much support.”

Belinda said her four-year-old son Jamie has NF1.

“At this stage we are going to see a geneticist and Jamie will need scans for tumours - which will happen annually,” she said.

The Day family will be participating in the walk on Monday.

“We will have cousins, friends and family coming with us,” Belinda said.

“Last year, our daughter rode her pony in the walk.

“I’m hoping there is a really big turn out.”

Belinda said if there are more local families going through the same thing, the walk is a great way to provide support and meet other local families.

This year’s walk will be held at Nine Mile Station, the turnoff is 15km from Broken Hill, before Stephens Creek, on the Silver City Highway (Tibooburra Road).

The walk will be held on Monday and will start just passed the homestead at 9.30am.

There will be toilets and bush parking available. There will be a garage sale and sausage sizzle also.

If you would like more information contact Mia or Greg on (08) 8088 5304 or 0448 201 979.

For more information about NF visit www.ctf. org.au.

To donate visit https://nfwalk.everydayhero.com/au/broken-hill-stepup-and-step-out-for-nf.

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