By Vanessa Chircop
FOR Melissa Sharp and her son Dylan, Very Special Kids have been a godsend.
Dylan, 9, has a neuro-degenerative or metabolic disorder, epilepsy and autism and though this may seem like a mouthful Melissa said Dylan’s condition remains largely undiagnosed.
Melissa said she knew something wasn’t right with her son when he failed to reach certain milestones as a baby.
Dylan didn’t walk until he was five and half, he is unable to talk and is fed through a tube every four hours.
Dylan’s father – unable to cope with his son’s illness – left when he was just 15 months old and Melissa has been the sole parent of Dylan all these years.
Very Special Kids is a unique organisation that supports families throughout their experience of caring for children with life-threatening illnesses.
Sadly, many of these children will not reach adulthood.
It costs $4.5 million a year to run Very Special Kids including $1.3 million to operate Very Special Kids House.
Less than 25 per cent of the annual operating cost is provided by the Victorian Government making fundraising and donations vital.
The Rotary Club of Altona City is holding their ninth annual Golf Day to raise much needed funds for Very Special Kids.
The Ambrose event is being held at Kooringal Golf Club in Altona on Friday 25 February with a 12.30am shotgun start.
Melissa said the charity had been an amazing help to her.
“They provide us with up to 21 nights respite each year – they’ve got full medical staff and it’s great to know that I can leave him there and not have to worry about him,” she said.
Melissa does not know what the future holds for her little boy.
“I deal with today and don’t worry about tomorrow. We don’t know how long he’ll be here for but you just make sure today is a good day.”
“You make sure that if he does pass away you have no regrets.”
For information on the Ambrose event, call Ivan Board on 9749 3808 or email ivan.board@bigpond.com or check out website www.rotarydistrict9800.org/altonacity
