HAWTHORNE, N.J. -- Johanna Burke's son is almost 14 but he can't say the word "mommy" and he's yet to master the everyday function of using the bathroom.
"He's regressed. It’s an ongoing never-ending process. He will need 24-hour care for his entire life," said the 47-year-old lawyer who co-founded the nonprofit fight4autism.org with her friend Lori Fiordilino of Nutley.
Necessity is what prompted Burke and Fiordilino to start a nonprofit to help families like theirs affected by autism.
"Autism takes a toll on finances. Not enough is being done to help local families," Burke says.
Someone has to stay home and juggle the demanding schedule of specialists and therapies that come with an autistic child, she says.
That duty falls to her husband Edward, 50. They also have a son Dailey, 12.
One in 45 children have autism in NJ, Burke says, noting it's the highest rate in the nation.
Fight4autism.org works to help families with daily necessities.
"We've help 15 families in Northern New Jersey with over $15,000 of services," she said.
She knows more help is needed. The group's first Fight for Autism Walk last year raised $20,000.
"This year we want to double it," Burke said of the planned June 4 fundraiser .
A Blue Hair tricky tray fundraiser is planned April 2.
"The town of Hawthorne is wonderful. They all know Aidan and do anything to help us," Burke said.
Burke hopes to keep raising funds and awareness through Fight4Autism, doing what she can on a local level.
She knows the fight is lifelong and is not hers alone.
Burke said moms of autistic children "fear what will happen to our kids when we’re gone.
"Eventually, Aidan will age out of the system and then there will be nothing for him. In the state of NJ, there is no appropriate placement for them. There are group homes and they suck."
Her long-term goal is to set up communities for autistic adults.
For more information about Fight4Autism see the organization's website.
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