HAWTHORNE, N.J.– All is right in the world for Johanna Burke of Hawthorne when she sees her son Aidan smiling.
Aidan, a non-verbal 13-year-old, requires 24-hour care for a variety of conditions -- autism, verbal apraxia, sensory integration disorder, epilepsy, an immune deficiency disease, bipolar depression and obsessive compulsive disorder.
To help him and other special needs children and their families, Burke teamed up with Nutley mom Lori Fiordilino to create Fight 4 Autism .
The group is hosting its first annual walk on June 5 at Hawthorne High School. A benefit concert on Aug. 14 at the band shell is in the works, as well.
"We started Fight 4 Autism because we wanted the money that we had been fundraising for autism to be given back to families like us who really need it to help pay for therapy, communication devices, after school care, summer camp, and more," said Burke, who works for Pearson Publishing and as a special education attorney.
Therapy could cost around $150 per session, she added.
The organization gave one family $1,200 worth of respite care, purchased three iPads for children to use as communication devices, and gave another family a $2,000 grant to build a fence around their front yard, Burke said.
"All of these kids need a voice," Burke said. "There's no cure. it never goes away."
She knows from experience.
"It breaks my heart every day," Burke said. "It's an overwhelming sadness. My son will never be independent. He will never have friends. He will never go to college. He was robbed of so many things.
"He will be with me until the day I die."
Being the parent and primary caregiver of a child with special needs – Burke's husband Ed is on permanent disability – "is very challenging."
"You need a lot of patience and a lot of love for Aidan," Burke said. "Our entire family revolves around Aidan and his autism."
The Burke's other son, Dailey, 11, has his own individualized education program.
As Aidan's mood goes, so does the family's.
"His smile gets me every time," Burke said. "As long as he's smiling, I'm a happy mom. Nothing else in the world matters."
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