April was a heart-shattering month for Michael’s parents who died at age 14 after a seizure caused him to go into cardiac arrest that later took away his life. Michael had a severe form of autism and also had an extensive history of epilepsy. National Institute of Neurological Disorders and Stroke’s data shows that 20-30% children with ASD develop epilepsy by the time they become adults.
When Michael’s parents were waiting in the hospital, a doctor suggested donating Michael’s organs. It was when his mother, Mrs Bolen decided to donate his brain.
Bolen and her family donated Michael’s brain to a national program called Autism BrainNet, a network of research institutions that facilitates the study of autism using the brain tissue of deceased patients who had the developmental disorder.
A CNN article covers their story in detail and here are some excerpts.
Michael’s family hopes that his brain may help scientists gain crucial insights into autism spectrum disorder, which Michael lived with and that affects about one in 68 children in the United States.
Loving and losing a son with autism
The moment Michael Bolen was born, he let out a piercing cry and commanded the attention of the room. Just like that, his mother said, he always seemed to know how to capture the interest of everyone around him.
“I’m not joking, from the moment he was born,” Leslie Bolen said as she reminisced about the day she gave birth to her second child in 2001.
“He was nonverbal; however, 98% of the time, he would communicate his point very well. When he wasn’t happy, you knew about it. When he was happy, you knew about it,” said Bolen, who lives in Pennsylvania with her husband and two other children.
When Michael wasn’t happy, he would turn self-injurious and aggressive, Bolen said, even head-butting her in the throat or banging his head so forcefully against the wall that it would dent or break.
When he was happy, he would smile nonstop and often snuggle up with his father to watch movies and play games on an iPad.
“He was so good with Michael,” Bolen said of her husband, with a quiver in her voice.
“Michael was an incredibly hyperactive child. He got into everything all the time. I used to joke he was like the Tasmanian devil and Tigger all in one, because he didn’t just bounce, he didn’t just whiz, he did both at the same time nonstop,” she said. “It was amazing to watch his mind work.”
Leslie Bolen said of her son Michael.
“His dad was just absolutely his best friend,” Leslie Bolen said of her son Michael.
You can read about it on CNN here.
Autism Web gladly welcome your questions, suggestions and comments. Please write to us or contact us through the comment section below.