I'm taking part in the 2014 Melbourne Marathon Festival and hoping to raise awareness and funds for Isla, Sandhoff Disease and Very Special Kids.

Michelle is a friend of mine from school, who I've known for many years. Michelle & Robyn were known as the twins at school and they were, and still are very kind-hearted, caring and sincere. They've helped me personally and also shared a laugh and a love for MJF and Ferris Bueller ;-)

When I heard that Michelle's daughter was diagnosed with Sandhoff disease, I immediately wanted to raise awareness and funds to further facilitate the understanding and treatment of this rare and terminal illness. Unfortunately there isn't anywhere I can donate to specifically for Sandhoff disease, however Michelle explained that Very Special Kids have been wonderful. I'm very familar with VSK, as I used to volunteer for them, so I'm honoured to raise funds for them.

As you can see, this isn't a typical fundraiser for me. This is about someone who I know, who has a little girl with Sandhoff disease. http://en.wikipedia.org/wiki/Sandhoff_disease

Running is a way I can raise awareness about Sandhoff disease and funds for Very Special Kids, who work with families everyday with conditions that most of us have never heard about. This is my chance, and yours, to help Isla and her family, and potentially other families in a similar position. 

I'm so grateful to have healthy children and I can't imagine how difficult it must be for parents at VSK. My heart and prayers are with you.

Below is from an article http://www.heraldsun.com.au/leader/central/very-special-kids-put-out-the-piggy-banks-to-help-collect-for-children-with-lifethreatening-illnesses/story-fngnvlpt-1227043974106

Isla is a very special kid.

At 18-months-old she was diagnosed with Sandhoff disease, a neurological condition that affects the central nervous system and causes a slow deterioration.

Children diagnosed with Sandhoff disease usually live between three and five years.

Since then her parents and two older brothers have been swept along in a blur of emotions, as they battle with an array of feelings no family thinks they will ever have to go through.

But helping them through their journey is Malvern-based charity Very Special Kids.

VSK cares for children with life-threatening conditions by providing a children’s hospice and family support services, helping more than 800 families across Victoria.

Parents Jon and Michelle Kaila remember the day their daughter was diagnosed as if it were yesterday.

Mrs Kaila said Isla had been born 10 days early, but everything had seemed fine.

“Isla progressed normally up until about eight months, then her development slowed down,” Mrs Kaila said.

“At one year she wasn’t crawling and had no interest in walking but she ticked enough boxes that the maternal health nurses weren’t worried.”

She said it wasn’t until Isla was 14 months that she started noticing her eyes were “jiggling” from side to side. Mrs Kaila took her to the optometrist, where she was referred to the Royal Children’s Hospital.

“Isla had an MRI and the doctor had a good look at her eyes and said it was a metabolic problem rather than her actual eyes,” Mrs Kaila said.

She was taken for further tests and a couple of months later the Blackburn South family received the diagnosis — their daughter had Sandhoff disease.

“I knew something was wrong. I was worried,” she said.

“I’d never heard of it before,” Mrs Kaila said.

Mrs Kaila said she listened in a haze as the doctor went through all the information, including contact details for VSK.

“I felt really isolated. I didn’t know anyone else with a child with a terminal condition.”

Mrs Kaila said when she rang VSK for the first time, she spoke with family support worker Angela Flood.

“I felt like I was talking to someone who understood. I didn’t feel so alone.”

The Kailas were linked with another family facing a similar situation, which Mrs Kaila said helped her immensely.

“That feeling of being the only mum with a child with a terminal illness disappeared. We became friends instantly.”

Mrs Kaila said her daughter had never talked, never walked, never crawled properly and was now PEG tube fed. But she said Isla loved when her brothers read to her, going to music therapy, cuddles and her dad.

She said VSK had been a lifeline for the family and made an incredibly tough journey that little bit easier.

“My other children Aidan, 8 and Noah, 6, attend the sibling days and they love it. And they’re (VSK) always asking me what I need,” Mrs Kaila said.

“We also have a family support worker once a week for two hours. It means I can do the grocery shopping, because Isla can’t sit in the trolley.

“I have more freedom to help out at school, do school pick up, or get a haircut.

“I feel very lucky to have this organisation. I really don’t know what I would have done without VSK.”

I am honoured to be a part of this amazing race and helping a great cause, and I’d really appreciate your support in this endeavour. 


Thank you for your support and helping to make a difference