Hello, my name is Stacey Chillemi and I am the author of this children’s book, “My Mommy Has Epilepsy.” I am writing this piece to you to explain what the book is about and how this children’s book can help you and your family understand, cope and not fear the disorder known as epilepsy. In the year 2000, my husband and I had moved into a new neighborhood with my 2 sons, and my daughter. All three children were toddlers at the time. Even though I developed epilepsy at the age of 5 my kids had never witness me having a seizure. One day I was outside my home and I had an aura I felt a seizure beginning to evolve and before I new it I was having the seizure in front of my children for the first time. My children were scared and even though I had explained my disorder many times they were still a bit confused about what epilepsy is, what happens and what to do if someone is having a seizure. You can explain what a seizure is, but honestly to see someone have a seizure, especially for a child can be scary and very dramatizing. After the seizure my children were very scared, confused, and worried about their mommy and they had many questions to ask afterwards. I tried to explain everything to them in simplistic terms, so they could understand epilepsy better, but everything didn’t seem to click. They were still confused, scared, and worried. They wanted to help me, but they didn’t know how. So one day I sat down wrote a story about the day I had a seizure. I explained what epilepsy is, and what to do if someone has a seizure. My goal was to educate and try to explain to my children why they shouldn’t fear epilepsy and seizures. When someone understands epilepsy and they know what to do you’ll notice that the fear begins to disappear and the situation (having the seizures) is treated with more confidence and children are able to cope with their love one’s disorder better. The story and the illustrations I created helped my children understand my disorder completely. And they’re not afraid of my seizures anymore. They know what to do and the fear of their mommy having seizures has gone away. It’s a part of mommy. It’s a part of her life and now they have learned to accept it. In fact my daughter many times has introduced as, “Hi this is my mommy and she has epilepsy!” I put many epilepsy resources in the back to help educate you and your children. Epilepsy is not going to stop me from enjoying life. In my eyes, I am winning the battle because I have not even up on life. I am determined to live a happy, healthy and productive life with my family and friends. I have 2 children books out with completely different illustrations. The first book I wrote was called, "My Mommy Has Epilepsy." What motivated me to write another children’s book about epilepsy is that one day my son Michael came to me with the book in his hand and asked me, "Mommy can daddies have epilepsy too?" "If mommy's can have epilepsy can't daddies have them too?" So I went back to the drawing board and created a new story and new illustrations and called it, “My Daddy Has Epilepsy." Thank you, Mrs. Stacey Chillemi

Stacey Chillemi keeps a positive outlook when disorder poses challenge


BY KATHY BARATTA
Staff Writer

Author Stacey Chillemi, shown here with her husband, Michael, tries to look on the bright side of life as she deals with the effects of epilepsy.

MANALAPAN - Stacey Chillemi is no stranger to a challenge. Since the age of 5 when a viral infection left her with epilepsy, she has been determined to live a life as full and happy as anyone else.

According to the Epilepsy Foundation of America, epilepsy is a physical condition that occurs when there is a sudden, brief change in how the brain works. When brain cells are not working properly, a person's consciousness, movement or actions may be altered for a short time. These physical changes are called epileptic seizures.

Now, as the mother of children ages 3, 6 and 8, and the published author of fiction and nonfiction works, Chillemi, 34, has accomplished the goal she set for herself following that first grave challenge that came at the tender age of 5. That goal was to enjoy life in spite of her disorder.

Chillemi's previous writings for the national Epilepsy Foundation as well as her nonfiction books that include children's books, made her a prime pick for the newest additions to the "Chicken Soup for the Soul" series.

Chillemi's original short story "Shop-ping My Way Out of the Blues" is included in the latest addition to the series, "Chicken Soup for the Shopper's Soul - Celebrating Bargains, Boutiques and the Perfect Pair of Shoes," which joined previous series entries on The New York Times best seller list.

If nothing else, Chillemi's message is one of perseverance and positive thinking, one that says physical or material setbacks are no excuse to buy into a victim mentality.

In an interview, Chillemi looked back and ahead with truth, honesty and a little self-effacing humor, the humor she says helps her deal with the harsh realities of life that beset everyone.

Chillemi said perhaps it was because she never saw herself as handicapped that she did not want to embrace limitations but knew she would have to be realistic and set a list of goals, not a wish list; like when she had to surrender her driver's license after suffering a slight seizure while driving and rely on her friends and family to be her transportation.

It was while in college that she wrote her first book, a book she said came from her own experience of dealing with "the strain of college and the effects of epilepsy medication."

She said when she went looking for books to help her deal with her problems, she found there were none and so she decided to write one. That first book, she said, was a self-help book.

Chillemi said she has written several self-help books since the first one, which was a compilation of her own experiences and those of others with epilepsy who shared their stories with her through the auspices of the national Epilepsy Foundation.

"They were stories of struggle and triumph," Chillemi said.

Chillemi said there are still hurdles to overcome, stereotypes and myths that are attached to the stigma that is still attached to epilepsy. She said that in spite of the technological and medical advances that have been made, people still tend to fear what they do not understand.

Always keeping in mind that epilepsy is a "disorder, not a disease," Chillemi said it is people like that woman who inspire her to write stories and to work to dispel the myths that stunt happiness and fulfillment in anybody, for any reason.

Young and young-at-heart parents, unite! Author and Illustrator Stacey Chillemi provide spactacular proof that children really understand more than you think.

Illuminating the cartoon illustrations of confusion and fear that epilepsy can cause, this new edition of My Mommy Has Epilepsy uses lively, subversive illustrations to show how to understand what epilepsy is and what to do if someone is experiencing a seizure.



This picture book is sure to elicit a clear understanding—and opportunity to illiminate children's fear of epilepsy—from all who read it.

About the Author
STACEY CHILLEMI is constantly tempted to help others with epilepsy and help their family on what it is, how to cope with it, how to get on with their lives, and more.

Living life with epilepsy can be a colossal struggle. But, if you are Stacey Chillemi, it is a challenge and an opportunity to help others.

Stacey Chillemi is 32 years old, a mother of three, a wife and writer. Her journey and reason for being is defined each day by the happiness in her children’s eyes and the people with epilepsy she has helped through her writing. “Through this experience with epilepsy I have learned to accept my limitations and to change the way I look at things. Through my writing I am able to help others and just knowing I’ve helped is enough of a reward,” said Chillemi.

How it Began

At five years of age, Chillemi contracted encephalitis from what doctors’ surmise began as an ear infection. For four days she lay in a coma and doctors were unsure of whether she would suffer from paralysis as well as the extent of the brain damage. Fortunately, she recovered from her bout with encephalitis with no paralysis. However, she was left with epilepsy. Since her diagnosis, 27 years ago, Chillemi has had seizures ranging in severity from mild seizures in her sleep to tonic-clonic seizures.

Living with Limitations

As a mother of three and a woman with epilepsy, Chillemi is realistic about her limitations, “Having epilepsy and being a mom is difficult at times because I worry that if I have a seizure and I am unable to recover fast enough, that my kids will suffer,” said Chillemi. In fact, the entire time Chillemi has been a mother she has had only one tonic-clonic seizure resulting in serious injury. According to Chillemi, she was walking the dog with her children when she felt a seizure coming on. She immediately instructed the children to go inside and wait downstairs for her. Following the seizure, Chillemi realized she had suffered a head injury and reached out to a neighbor for help. After the tonic-clonic seizure Chillemi decided to write a children’s book, called “My Mommy Has Epilepsy”. Her goal was to help children understand epilepsy in an age appropriate way as well as to help dispel some of the fear she had witnessed her own children experience. “I don’t want my children to get nervous or to worry about my seizures and the tonic- clonic seizure really motivated me to write a children’s book to help them and other kids cope and understand epilepsy.”

She admits she is also limited by not being able to drive, but attributes her ability to ask for help when she needs it as one more lesson learned. “At first it was difficult to rely on other people to drive the children and me places. I felt bad asking family and friends. But, now I’ve accepted my limitations and accepted who I am.”

Wisdom for Women

Chillemi cautions women with epilepsy to monitor their stress level. “Don’t try to accomplish too much. Do as much as you can and remember to set realistic goals and to reward yourself each day.” She also believes that in order to live with epilepsy and maintain a positive attitude it is important to focus on one’s self. “ Don’t look at what other people can do, only focus on yourself and your abilities because if you constantly compare, then you are adding to your stress level, which leads to being more physically drained and ultimately leaves you open to experience more seizures.” She advises women with epilepsy to educate themselves about their epilepsy and believes knowledge helps alleviate stress as well, “Women need to consult with their doctor, but not rely on their doctor for all of their information. In order to really feel empowered it is essential to take the initiative to learn all you can about epilepsy.”

"My Mommy Has Epilepsy," is children's story book with illustrations on each page. The author included extra pages on the back to write notes about any important factors about epilepsy.

The author was motivated to write this book after she had a seizure with the kids (ages 7, 5, and 2 years) while walking the dog. Chillemi feels it is important for a child to understand what epilepsy is, not to fear epilepsy, and what to do if someone you love is having a seizure.
This is what the book entails.

1. Epilepsy You're Not Alone
2. Eternal Love: Romantic Poetry Straight from the Heart
3. My Mommy Has Epilepsy (Children's Book)
4. Keep the Faith: To Live and Be Heard from the Heavens Above (poetry book)
5. Live, Learn, and Be Happy with Epilepsy
6. Epilepsy and Pregnancy: What Every Women Should Know
Co-authored by Dr. Blanca Vasques.
7. Faith, Courage, Wisdom, Strength and Hope (Poetry Book)
8. Let the love of Life Be the strength of your Soul (Poetry Book)
My websites:
http://www.inspirationallivingonline.com
http://www.authorsden.com/staceydchillemi

I am an H.O.P.E. Mentor, for the Epilepsy Foundation. I have spoken at different events for schools, organizations, political events, I spoke in front of Congress in Washington and anywhere my help is needed to educate people about epilepsy. I was on four talk shows. The interviews focused on the importance of understanding what epilepsy is, how to help someone having a seizure and giving people with epilepsy encouragement and hope for the future.
I have been on radio stations discussing epilepsy and I have appeared in many newspapers all over New Jersey such as, The Leader, Belleville Post and the Star Ledger. In addition, on June 26, 2002, I was honored an award by the Epilepsy Foundation of New Jersey for Outstanding Volunteer Award.
I have received awards in my achievements and certificates in recognition for outstanding efforts in trying to improve society. I have been an active participant in organizations and activities. I have been a role model to many individuals.
I have written many published articles. I have appeared three times on News 12 on the talk show New Jersey Women and has had articles written about her efforts to help people with epilepsy. I have contributed time in helping people with epilepsy and making society more aware of the disorder. .

I have a Associate Degree in business, a BA in marketing and a minor in advertising. I have worked for NBC, Dateline, Channel 4 News, and other large companies. And I have always had a strong background in Business and Marketing and I have a strong business background. Womans World Magazine just interviewed me for an article on all my accomplishments.

All my life, I have worked very hard writing books, articles,stories, going to TV interviews, going to washington to talk in front of congress and doing seminairs to help others empower themselves.

I refused to let epilepsy to take control over my life. I am determined to overcome any obstacle in my life caused by epilepsy.

There is no reason to feel different from anyone else. You have the right to be happy, to live life to it's fullest and enjoy the beauty and love ones that surround us.
I'll be honest I did not always feel life this, but I was not going to give up. I was determined to help myself and help anyone who suffered from epilepsy or any disorder or disability.

I interviewed over over 400 people with epilepsy. I created techniques, inspirational words to inspire your soul and much more.

I even had one women email and she told me that if it was not for my books and my regiments she would have committed
suicide. It brought tears to my eyes, but I am so happy that I can help others beside myself.

This book has been selling well and the positive feedback we have received is unbelievable.

'Life deals us many hard blows that we often don't expect. I admire the fact that someone like Stacey Chillemi was thrown a curve ball that may have knocked many of us down to the point where many of us may not have wanted to get back up, but she did. It wasn't easy but she possesses a determined spirit that won't let her give up. For that reason Stacey will go far and achieve whatever dreams she sets her mind to accomplish.'Della Crew

Published in the Asbury Park Press 06/9/05

BY ALESHA WILLIAMS
STAFF WRITER


Manalapan resident Stacey Chillemi, 33, understands the difficulties inherent in growing up with epilepsy.

Near-death experiences in her early adulthood, such as having a seizure while driving, impressed upon Chillemi the seriousness of her condition.

"My fiance, now my husband, was in the car," Chillemi said. "I realized I could have hurt myself as well as him. I had to accept the fact that I had epilepsy and not hide it from anybody."

Chillemi said she turned to libraries and bookstores to search for answers to her questions about her disorder.

"At that time, all the books about epilepsy were written in medical terminology, so if you were not educated in the medical field, you had no idea what they were trying to explain," Chillemi said.

Chillemi said she published an article asking people with epilepsy to write to her with their stories. She received hundreds of letters from across the United States and Canada and interviewed about 400 people, she said.

"We were all going through the same issues and emotions," Chillemi said. "I learned, "Hey, I can't feel sorry for myself — I need to do something about it, and try to help others.' "

And so began Chillemi's career as an author, launched in 2000. She since has written eight books about epilepsy, about life and about love, including her latest, "Epilepsy and Pregnancy: What Every Woman Should Know," co-authored by Dr. Blanca Vasques (Demos), due to be published in 2005.

"Basically, in my books I try to focus on trying to help people understand first of all what the disorder is, how to accept it and teach the people in their lives to understand it so it doesn't tear a family apart, how to love themselves and get on with their lives so they can live a healthy and productive life with the disorder," Chillemi said.

In spite of living for 27 years with a condition that keeps some reclusive and anti-social, Chillemi has managed to live by those ideals. She volunteered as a mentor with the Epilepsy Foundation of New Jersey and in 2002 won the organization's Outstanding Volunteer Award. She is a featured speaker at schools, organizations and political events and also spoke before Congress with the Epilepsy Foundation in 2004 on behalf of people with epilepsy, she said.

Today, Chillemi lives in Manalapan with her husband Michael, 33, and three children, Michael, 6, Alexis, 4, and Anthony, 2, and said she often is touched by e-mails and letters from readers who say that her books have helped change their lives.

"It's hard to believe that something you wrote helped someone like that," Chillemi said. "It makes me feel very good to give people encouragement, hope, to help them realize that they are somebody — that they all have a meaning in life and just have to find that destination."

For more information about Chillemi's books, visit www.authorsden.com/staceydchillemi

Stacey Chillemi is 32 years old, a mother of three, a wife and writer. Her journey and reason for being is defined each day by the happiness in her children’s eyes and the people with epilepsy she has helped through her writing.
By Jenna Martin, Senior Editor
www.epilepsy.com

I found this book very insightful. Although not having epilepsy myself, I think this book is a good way to explain to children about epilepsy. I, myself, learned quite a bit about the disorder from reading it. Being prepared and knowledgeable is the best way to help someone with epilepsy. This book helps children become prepared.

I found this book a very easy read, which is important in trying to explain epilepsy to children. To educate children of the disorder is something that might seem like an difficult task, something thats pushed off to the side for a later date. However, with this book, its a task that doesn't look so daunting. You can explain epilepsy to your children in language that they understand.