New van would make 'life easier'

Four-year-old Marco Coates and his mother, Sarah, Marco has a rare gene-linked brain malformation. PHOTO/RUTH KEBER

Marco Coates has a super powered personality - however the four-year-old suffers from a rare gene-linked brain malformation.

His family are trying to raise money to buy a wheelchair-accessible van after their bid for a lottery grant was unsuccessful.

Marco Coates, 4, has lissencephaly which means smooth brain. Instead of normal convolutions or folds in the cerebral cortex of his brain, the tissue is smooth.

Having beaten the odds already - it was said the little boy would not live past the age of 2 - Marco enjoys an active life including going to the local kindergarten, visiting a sensory room, swimming and being out and about in the community.

However, he is prone to seizures, gets sick easily and needs 24-hour care.

He weighs 18 kilograms and it can be dangerous for parents Sarah and Layne Coates to transport him in their cars.

Marco needs a wheelchair-accessible van. Once the family buys a suitable van they can apply for health funding to have the van fitted out properly for him.

The Coates family applied to the Lottery Grants Board to get funding for such a van, but missed out - there were 181 applications to the individuals with disabilities committee, with grants awarded to just 70 this year.

Marco's mother, Sarah, said they knew something was not right within months of him being born.

"He started having seizures when he was 4 months old and before that he wasn't hitting his milestones."

Tests confirmed her first-born had the gene-linked brain malformation.

Mrs Coates said it had been a rough road but her son had changed her family for the better. "He brings out the best in everyone. He's so simple that it's easy to love him because he doesn't do anything wrong. He's changed our family, we were a good family before but we didn't know what we were missing. It was taking love to the next level with a kid like Marco."

Mrs Coates' two sisters, Meg and Hannah, set up a Givealittle page to raise funds for the family.

"I would have never ... have initiated it but a van would mean making life so much easier."

Meg Cowan said her sister dealt with enough day to day so she put the page together.

"I thought it would just be our friends and family and we would get a couple of thousand and that would be an awesome help. But I have been amazed by Kiwis all around the country who don't even know Marco who have given."

-To help Marco get the ride he needs please visit the Givealittle page: givealittle.co.nz/cause/marcosride