FIVE-year-old Marc Collins is unable to move and speak due to a rare genetic disorder that means he needs round-the-clock care.
Despite the little boy’s difficulties his parents, Rebecca Vittiglia-Collins and Stuart Collins, consider him their hero.
The Morley couple have been struggling to provide their son with the care he needs with Mrs Vittiglia-Collins almost suffering a nervous break down earlier this year due to the constant needs of her son.
“We call him our blue-eyed hero because his eyes are so blue and sparkly. You can tell he loves everyone, he is so happy. He brings us a lot of joy,” said Mrs Vittiglia-Collins.
“We don’t know how long we will have him for,” she said.
“Every day with him is a blessing.”
Marc is one of only 13 children in WA suffering from Lissencephaly, a life-limiting degenerative brain malformation disorder that includes global developmental delay, severe epilepsy, vision impairment and chronic lung disease.
Earlier this year the not-for-profit Hannah’s House in Cannington stepped into the frame to provide much needed home nursing and respite care to the family.
Mrs Vittiglia-Collins said Hannah’s House was a godsend for the family providing a registered nurse two days a week to assist with Marc’s complex medical condition at home.
The 12 hours per week that Hannah’s House provides the family allows Mrs Vittiglia-Collins to have a break and attend to the needs of her other son, Anthony, 2, without being concerned for Marc’s safety.
“For the first three years I had no respite. It was bloody hard, it was horrendous. It was 24/7 around the clock,” she said.
A social worker at Princess Margaret Hospital (PMH) saw that help was needed and arranged for Hannah’s House to contact the Collins family.
“I don’t know how I did it before. I had no choice. I had to. The idea of ever losing the support would be terrifying. I am 100 per cent reliant on them,” she said.
In the past 12 months Marc has spend 82 days in PMH due to complications associated with his disorder including uncontrolled life-threatening epilepsy.
Marc’s medical challenges are significant. Due to feeding difficulties that resulted in him aspirating when fed orally, he is now fed via a tube through his abdomen.
In the past five years Marc has attended well over 400 appointments with medical professionals and has had more than 50 hospital admissions.
“At this point in time, Marc requires a cocktail of over 15 different medications and additional supplements,” said Mrs Vittiglia-Collins.
“For a kid who has been to hell and back many times he is so happy and content in himself when he is well. He is just beautiful, he just shines love,” she said.
She said her son was working on neck and torso control as well as his arm and hand coordination.
“This gives hope that one day he may sit somewhat independently,” she said.
Mrs Vittiglia-Collins said while they received support via the National Disability Insurance Scheme she still had to do a lot of fundraising to try and cover significant out-of-pocket expenses for Marc.
She said her husband ran a cabinet-making business and due to time off because of his son’s illness this had impacted on the family’s income.
“The whole journey is quite expensive. I can’t work any more so we have lost any income I used to earn.
“If my husband doesn’t work, he doesn’t get paid.
“We are forever grateful to Hannah’s House for their support. It has been life changing.
“They are just an extension of our family. They want to help and do everything possible to support our family.”
For people interested in supporting Marc visit www.facebook.com/supportmarc.