Life for Lief ~ “See Me As Smart”

communication written in lower case white text over an white equal sign on salmon backgroundLief O’Neill is autistic and uses AAC to communicate. The persistence and dedication of Lief’s mother helped save Lief’s life.

Lief developed cardiomyopathy at the age of 10, after a long illness. His heart was enlarged to the point that it was filling 1/3 of his torso. At first, no mention of a heart transplant or LVAD, another life-saving treatment, was mentioned. His mother, Sunshine Bodey, says she has believes that this was because of his level of autism, and that they were later told that two transplant programs simply wouldn’t evaluate Lief for a transplant operation based on their view of his competence.  Heart transplants still require an evaluation that determines a person’s compliance and intellect when making the decision to gift a heart. This dark side of medical prejudice isn’t just an embarrassing story of our nation’s past, it was happening alongside of Lief’s struggle to stay alive.

Lief’s family set about showing that his being autistic didn’t affect his competence or his appropriateness as a recipient for a donor heart.

“My autism is hard because people don’t know that I am smart,” said Lief.

Thankfully, family friend Tiffany Mamalove had created a video two weeks prior showing Lief in action. This video helped save Lief’s life.

Lief starts all conversations with “See me as smart.”

I asked the question at the forefront of my mind first: “What did you think when you heard you would need a heart transplant?’

Lief: “I thought it was scary.”

He then elaborated: “Some people think that kids who are autistic can’t handle getting a transplant. Kids with autism can handle it.”

Thanks to advocacy efforts from family, friends, Lief’s doctors at Doernbecker Children’s Hospital in Portland, and a surgeon at Lucille Packard Hospital in Stanford, California, that agreed to do the surgery, Lief became the smallest and youngest person to receive adult LVAD. This intervention kept him alive while he waited for a donor heart, which he received in June 2013.

Keep up with Lief’s story on the family Facebook page: http://www.facebook.com/LifeForLief

About the Author:

Ollibean is a dynamic community of parents, families and advocates in the disability community working together for a more socially just, accessible and inclusive world.

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