TEN years ago, the McKees welcomed Emma into the world.
She was seven weeks old when the Riddells Creek family noticed she was having seizures.
“She never really reached any of her milestones,” Emma’s mother, Jenny, said.
“It sort of took a while to realise what she was doing.”
Emma was diagnosed with a severe form of epilepsy, which later led to the detection of Lennox-Gastaut Syndrome.
The syndrome is typified by multiple varieties of seizures.
“Emma has up to five different types of seizures on the one day,” Jenny said.
The 10-year-old is non-verbal and is fed through a tube.
Emma’s mother, her father Rodney and her 14-year-old brother Jarrod do all they can to help her.
About two years ago, a family friend suggested the McKees seek help from Very Special Kids.
The charity provides support for children with a life-threatening condition, their families.
There were tears the first time the McKees dropped Emma off at the Very Special Kids children’s hospice, in Malvern, for respite care.
“We felt guilty,” Jenny said.
“In the early years I never felt like I could leave her, but we finally realised we cannot do it all alone.”
She said the hospice provided each member of the family with a break.
Guests receive 24-hour nursing care.
“It’s not just a babysitting service, it’s real and it’s nice to know there is a professional service there,” Jenny said.
“Now Emma loves the hospice and we feel comfortable leaving her there, knowing she is safe and with good people.”
The charity also helps Jarrod by putting him in contact with young people of a similar age, who have been “in the same boat” as him.
“It’s just comforting to know you’re not alone,” Jarrod said.
Jenny said her son recently went on a six-day snow camp with Very Special Kids, at no cost to her family.
“The full family support – that’s the amazing part of it,” she said.
More than 900 Victorians families receive support from Very Special Kids, more than 50 of whom are in the Loddon Mallee region.
The charity costs more than $7.6 million a year to operate, and provides hospice stays free of charge.
“Without donations from our community, we would not be able to continue caring for those brave families,” chief executive officer Michael Wasley said.
Commonwealth Bank employees last week showed their support for the charity at the Eaglehawk branch.
Fundraisers have been organised for Daylesford, Bendigo, Castlemaine, Ballarat and Epsom next week.
Each destination will be visited by a 700 kilogram piggy bank, which is touring Victoria on a quest to raise $1 million for Very Special Kids.
The giant piggy bank will be at the Commonwealth Bank in Daylesford from 10am – 2pm on Wednesday, September 20, stopping over at the Bendigo branch from 10am – 3pm the following day.
It will spend September 22 at the Castlemaine branch, from 9am – 5pm, before voyaging to Bunnings Ballarat from 9am – 4pm the following day.
The piggy bank’s journey through the Loddon Mallee concludes at Bunnings in Epsom on September 24, from 9am – 4pm.
People can also text ‘EMMA’ to 0455 021 021 to donate to the Very Special Kids Piggy Bank Appeal.