About the Book
Hearing the words, "There is no cure," never stopped Kristin and Ozzie Skenderi from diving into every resource, medical expert and alternative option available to help save Nixon, their 6-month-old son.
Diagnosed with Gaucher's Disease Type 2, Nixon was given a life expectancy of 3-years-old. He will be four on November 1, 2017! Follow Nixon's journey as his family chronicles the roller-coaster ride of their lives. You will learn how they reached beyond traditional medicine and explored some alternative options that have positive results.
A profound, true story for any person experiencing a difficult situation or who has a child who is ill. Find the light at the end of the tunnel with them as you experience frustrations, limitations, breathtaking moments, miracles and the gift of Nixon's smile. This book will inspire you to
Follow your instincts
Push the envelope
Uncover new options
Always remember to hold hope in your hands
And never, ever give up!
About the Author :
Hearing a doctor say, "Your child is going to die," was the worst moment in Kristin Skenderi's life. Luckily, she is an eternal optimist and has never been one to take "no" for an answer. "Every time a doctor tells me that my child is going to die, I reply, 'I hear what you are saying, but that is not going to happen. Until I have exhausted every single option in this world, I will not give in.' From that moment on, I keep it in the back of my mind. And every time I hear it, it just gives me the drive to fight harder." Wife and Author, Kristin Skenderi, is also Champion Mom for son, 3-year-old, Nixon Skenderi. "Even when I was younger with anyone who was sad or sick, my response was, 'Okay, well, it happened; how do you fix it?' A lot of people get hung up on the 'why or how did this happen?' I say, 'who cares?' It happened. It doesn't matter, lets find a way to just fix it." After growing up in Des Plaines, Illinois, Kristin graduated from Illinois State University driven to achieve great success in sales. She worked very hard at it and excelled amongst her colleagues. Her high school classmate, Ozzie Skenderi, graduated from Western Illinois, and the two were married in 2012. Soon after, in 2013, Nixon was born, and Kristin planned to and wanted to return to work. "When he was diagnosed, and I realized our lives were changing, my constant need to be busy, to work, to have job security, money and everything else went out the window. My sole focus was about him. I was and still am determined to do anything I can possibly do to save Nixon's life." To find the 'right solutions, ' Kristin asks questions and takes copious notes. "I think we live in a world today that gives us so many options. We just have to keep looking. I always argue my way until I feel that I have found the right solutions." "When the doctor is talking to us and giving us all types of information, we are not really 'listening' to what he/she is saying. I use my notes later when I have time to read and digest the notes, research more and asses the following: -Here's what they are saying. -Here's what they are saying can be done. -I think outside the box and ask, 'Is there another way? If we all worked together, maybe there is a better solution.' -Then I ask, 'Am I well-informed; what is my instinct telling me; and does this 'feel' like the right approach?" There has never been a time when Kristin and Ozzie have felt they were going to throw in the towel and give up. They always wondered about how or if they would know. A good friend whose son had the same diagnosis shared, "You will just know. I can't even describe it to you. Nixon will tell you. He will tell you, 'It's time. I'm done.' And you will know." "Every time we try something new or we are going through a process, I look at Nixon's face, his eyes, his demeanor. For the more difficult decisions, I say, 'You have to guide me through this.' Never once has he told me to stop. His strength and will to live drives me every day. He is the strongest person I have ever known." President and Founder of SoConnected LLC in Downers Grove, Illinois, Cindy Tschosik loves to connect and collaborate with clients to produce high quality content that brings great value to the reader. Whether a book, article, newsletter, website content or marketing material, Cindy's secret sauce is her connection with her clients which drives the messaging and content. With a successful and high achieving background in Paralegal, IT, Communications and Marketing over 25+ year span, her background provides a wide berth of experience, knowledge and resources to use while producing written work. Cindy's focus with content development is to capture the reader's attention, elicit emotion, and present the reader with great value that is educational, entertaining and informational that includes the tools, tips, and solutions they need to achieve their goals. "I love what I do. I'm a midwestern gal, born and raised, mom, wife, friend, and ghostwriter who loves to partner with others share their stories. I operate at the highest level of integrity and am focused on helping share your story with the world." - Cindy Tschosik Carrie Keppner is a Graphic Designer and Production Manager. She began her independent business in 2007. Carrie attended Bradley University where she received her Bachelor of Arts degree with a minor in Art History. She demonstrates an amazing work ethic with great attention to detail from concept to completion. Carrie provides creative services that includes, but is not limited to: logo design, marketing collateral, packaging, book design, photography direction and production procurement. Her devotion shows in lasting relationships she forms with her clients. Beyond her independent business, she is a wife and a mother to three children.
Review :
"There are no words to describe the strength, optimism, and inspiration surrounding Nixon's journey. This little boy has defied all odds and only keeps fighting, while along his way, proving many in the healthcare field wrong. His mother and father are prime examples of pure love, positivity and persistence." - Christina Guthrie, Licensed Acupuncturist and Owner of Eastern Vitality Acupuncture, Inc.
"This story of Nixon's journey has opened my eyes to reality, and the fact that no one, no matter who you are, is exempt from a devastating event that could turn your life upside down. It will change your outlook on life and make you think twice before taking anything for granted. " - Jamie Coan, Educator
"Life changing. Kristin's story of hope helps you persevere through obstacles you face in life with a positive mental attitude. If you don't believe in miracles, you will when you are done with this book!"- Kristy Cikowski, Social Media Specialist
"An awe inspiring, up close and personal story of a young family as they navigate the world with an infant diagnosed with an extremely rare disease. Their courage and never-ending strength has forever changed my definition of hope and what it means to be humble."- Laura Durava, Retired Chief Operating Officer
"This journey is a moving account of love and strength. This story is courageous and inspiring, as it faces the most heartbreaking challenges that life offers when the Skenderi family learns of their infant son's rare disease. This is a powerful testimony of one couple's love, courage and determination to never give up. "- Linda Paller, Registered Nurse
"This story is a prime example of a mother and father going above and beyond to help save their little boy. They will stop at nothing to make sure their child gets the best care and life that he deserves. I am honored to be a part of this amazing boy's journey as one of his healthcare providers."- Kelsey Ortiz, Registered Nurse
