Fashion Sale fundraising for families

Every year Very Special Kids hold a Fashion Sale in June to raise much needed funds to be able to support families and children with life threatening illnesses.

With the help of their Fashion Sale Ambassador and founder of blog What Would Karl Do, Jess Dempsey, Very Special Kids aims to raise $50,000.

“It was an easy choice to make when I was asked to be the Fashion Sale Ambassador. Each year the bi-annual sale raises close to $100,000 for the charity, which costs $7.5million annually to operate, and I feel lucky to be able to help them do that.” Says Jess.

15 year old Christian Tomai, is one of the children Very Special Kids supports, and his siblings and mother benefit from the services offered.

At just two years old after many seizures and constant worrying from his mother Ersilia, Christian was diagnosed with Dravet Syndrome, which is a rare and catastrophic, lifelong form of epilepsy.

“The prognosis was really bad and we were really upset, I just felt hopeless” said his mum.

Christian is a very friendly and affectionate boy. Although he suffers from intellectual disability he is very clever with all things tech, and despite the fact that Christian is mentally like a 4 or 5-year-old, his other hobbies include watching the footy and WWE wrestling, similar to many boys his age.

Life for Christian’s family is not similar to others however, as there is a constant uneasiness with a lot of worry.

“Kids with this syndrome have a very high mortality rate, about 20%. That’s what worries us the most, it’s always in the back of our minds” said Ersilia.

The Tomai’s got involved with Very Special Kids in 2011, and Ersilia has felt a lot of support since then.

“The biggest help was definitely the home volunteer provided by Very Special Kids, who looked after Christian for two years, he came every Sunday and would take Christian out. He loved him, and he was so good with the other kids as well. Unfortunately he moved interstate but he was an amazing carer and he still keeps in touch” Ersilia explained.

Their family support practitioner is currently looking to replace the home volunteer in order to continue that support. Christian’s siblings, Jasmine 13, Gabrielle 10 and Benjamin 8, are also regular attendees of our sibling days.

“The kids love the sibling days, it’s nice for them to do something on the holidays and have a little escape and to have something that is just for them” said Ersilia.

Recently Ersilia and Jasmine also spent some time with Jess Dempsey at our Bloggers Showcase.

tomai family3

Living with a child with a life-threatening illness is never easy and induces a lot of fear into a family’s state.

“I’m just thankful he is still here. Things could be going really well but one day he could just not wake up. I’m grateful for every morning that I still get to see him” she said.

To help Very Special Kids continue to support families like the Tomai’s, head to their Fashion Sale on Saturday 17 June, from 9am to 3pm, at Malvern Town Hall. Clothing will be on sale at upto 90% off, with tops, shorts and jeans from $10, jackets, blazers, dresses and knits from $30, shoes from $10, and accessories, bags and kids wear from $5!