Danielle Cohen wrote down nearly everything her grandfather, Jerry Lesonksy, said to her as he began to suffer from Alzheimer's Disease.
One of those things, Cohen said, was this: "If one day I don't remember your name, or your beautiful face, it's because of Alzheiemer's Disease. ... My brain may forget you, but my heart never will."
Lesonsky passed away in May of 2012, but his memory lives on in a new children's book written and illustrated by his granddaughter, based on the true story of their relationship.
Cohen's book What's Wrong With Grandpa? was released Aug. 28 via CreateSpace.com and is available for sale at $14.95 on Amazon.com. A portion of the proceeds goes to support research on Alzheimer's Disease.
"It really changed my life," she said of her grandfather's illness. "I wanted to do something to help other kids who are going through what I went through, to know they’re not alone."
Cohen was 13 years old when Lesonsky was diagnosed. Now 20 years old and a junior at Hartwick College in Oneonta, she is studying to become a physician's assistant with a concentration on geriatric medicine – inspired, she said, by the lessons she learned while helping to care for an ill elderly family member.
"It was really hard because he was changing so much," she said. "Some of us would get angry because he was angry. You have to remember that it’s the disease taking over, and it’s not his fault. It did cause a lot of tension but overall it brought us together."
Dr. Allen Crooker, Cohen's academic advisor and senior thesis advisor at Hartwick College, said her ability to follow through with her idea makes her unique.
"Many people are personally influenced by family circumstances such as Alzheimer's, but only an extremely small number are so motivated to write a book and further, to publish it, and of course this number is vanishingly small when you are speaking of a student pursuing an undergraduate degree," he said. "I have been very impressed that Danielle was so motivated in this direction and further impressed with the quality of the product – it was superbly done, both text and illustrations."
Cohen said she is planning to do her senior thesis on Alzheimer's Disease, and when it's complete, she plans to release a second edition of What's Wrong With Grandpa? that contains a section on the science of Alzheimer's Disease broken down into terms that parents can use to explain the illness to their children.
"The science will be a challenge because there is a lot of work on Alzheimer's and some of it is complex," Crooker said. "But her supreme challenge ... is going to be presentation to the public – the translation of the science of Alzheimer's into something the layperson can readily understand. I feel she is up for the challenge."
Cohen, a 2010 graduate of Ward Melville High School, has been invited to show her book at an upcoming educational conference sponsored by the Long Island Chapter of the Alzheimer's Association.
She said the process of publishing What's Wrong With Grandpa? helped her find some closure after her grandfather's death.
"It helped in the healing and grieving process," she said. "Although he wound up passing away before it was published, I was still able to read it to him. It helped me knowing that even though he passed away, I was moving on with a positive thing. I knew he would be so proud of me."