MORLEY mother Rebecca Vittiglia-Collins said when she found out her five-and-a-half-month-old son Marc had a rare genetic brain malfunction, her family was “thrown on a rollercoaster that we just haven’t gotten off”.
Ms Vittiglia-Collins will host a gala night and auction this month to raise awareness of Lissencephaly or “smooth brain” and funds to purchase a wheelchair-|accessible vehicle.
She said Marc was born “perfectly healthy and neuro-typical” but at five-and-a-half months old, he started turning his arms out, could not hold his head properly and was not making eye contact.
Ms Vittiglia-Collins and husband Stuart thought he might have cerebral palsy so took him to the family doctor and then Princess Margaret Hospital for Children where many tests were carried out.
“(They) said Marc’s brain didn’t develop properly in utero and pretty much our world came crashing down and we got thrown on a rollercoaster that we just haven’t gotten off,” she said.
“They said seizures would probably develop, he probably won’t walk, may not talk.
“He had his first seizure in the middle of Galleria, Gloria Jean’s, with my mothers group around me … thankfully they were there and we got an ambulance to PMH.”
As a result of having Lissencephaly, Marc is non-mobile and non-verbal with the developmental level of a three to six-month-old and has severe uncontrolled epilepsy, global developmental delay, cortical vision impairment, chronic lung disease, dystonia and is fed through a tube in his stomach.
Ms Vittiglia-Collins said managing her son’s round-the-clock care, medication and regular appointments with members of his 25-person specialty medical and allied health team was often a “logistical nightmare”.
She said Marc now weighed more than 18kg and it was becoming increasingly difficult to safely lift him, get him in and out of the car and carry him to his wheelchair, as he was unable to support himself.
Ms Vittiglia-Collins said they were fundraising to buy a wheelchair-accessible |vehicle, which would cost $95,000 including modifications, to make a “massive” difference to Marc’s life.
The couple also has a 17-month-old son Anthony and Ms Vittiglia-Collins said the brothers had a “beautiful” relationship and still fought like brothers.
“(Anthony) knows when Marc’s not well, we took him in to see Marc when he was in ICU and he was incubated and he looked at Marc, put his hands on him and cuddled into him, he didn’t touch any of the tubes,” she said.
A Casino Royale gala night and auction to raise funds will be held at Novotel Perth Langley, The Riverside Ballroom Saturday, February 25, 6.30pm to midnight.
To buy tickets go to https://www.trybooking.com/book/event?eid=247521.