Cha-cha cha-ching

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Cha-cha cha-ching

The Limestone Coast Line Dancers held their annual festive at the St Martins Hall organised by Yvonne Thomas and raised $2232 for the Children’s Tumour Foundation.


Neurofibromatosis, or NF, refers to a group of complex genetic conditions that cause tumours to form on nerves, under the skin and deep in the body – affecting one in every 2000 births, equating to approximately 13,000 Australians.


The Children’s Tumour Foundation (CTF) is the only national patient advocacy and support organisation for people living with neurofibromatosis (NF) in Australia.


They provide personalised, accessible support and resources free of charge to everyone impacted by NF, while also advocating for change and raising funds to advance promising research with the ultimate goal of conquering NF.


Locals Jason Leitch and his son William, who have both been diagnosed with NF2, attended the fundraiser in support of the cause and drew the raffle.


SUPPORT WELCOMED: William Leitch, Mary Thomas, Jason Leitch, Yvonne Thomas and Ken Thomas at the recent festive fundraiser held by the Limestone Coast Line Dancers which raised $2232 for The Children’s Tumour Foundation. Pics: Frank Monger Photography

Mr Leitch was diagnosed with Neurofibromatosis Type 2 (NF2) in 2005 and due to a 50% chance of inheriting the gene, two of his three children – William and Lillie – have both been diagnosed with NF2.


“It is probably too late for my husband but for someone like myself, having two children (with NF2), it gives me hope that one day they may be able to live a better life then what my husband has,” Mr Leitch’s wife Emily said.


Lillie said while she has never known a life without Neurofibromatosis, she is inspired by her dad throughout her own health journey.


“What motivates me is my dad. He never got a chance like i have and I’m really grateful and lucky there is much better research and doctors out there who are willing to help people like me,” she said.


“Dad lost his hearing completely when I was only one. Sometimes he asks mum what we sound like and that’s really hard to hear for all of us.


“Something I would like to tell others dealing with NF is that it may be difficult a lot of the time, but you just have to live everyday to your fullest because you never know when it could be your last.


“I am grateful for The Children’s Tumour Foundation for raising funds to help kids like me and my brother to have a chance at living a normal life .


“I want to bring NF out of the shadows as so many people have it and it is not talked about enough. I feel that talking about it more will help normalise it when more people are aware.”

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