Chicago Author Shares Son’s Medical Struggle Journey in ‘Holding Hope in Our Hands’

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During a short hospital stay in early 2014 for their baby son Nixon, Kristin and Ozzie Skenderi of Chicago heard the gut-wrenching words that no parent wishes to hear: “There is no cure.”

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Kristin and Ozzie Skenderi support their son Nixon who suffers from Gaucher disease Type 2. Kristin details her family's search for medical solutions in her book "Holding Hope in Our Hands."

You see what it’s like getting the diagnosis of a terminally ill child; what he went through, what we went through, and what happens when you never give up. You follow our journey as we chronicle the rollercoaster ride of our lives.

During a short hospital stay in early 2014 for their baby son Nixon, Kristin and Ozzie Skenderi of Chicago heard the gut-wrenching words that no parent wishes to hear: “There is no cure.”

Nixon, born in November 2013, was diagnosed with Gaucher Disease Type 2. According to the National Gaucher Foundation, this disease is a genetic disorder that severely affects the body’s organs and tissues. He was given a life expectancy of three years. Determined more than ever, the Skenderis actively sought medical assistance to give Nixon a fighting chance.

Going from hospital to hospital, Kristin found therapy by writing her thoughts and feelings through personal blogs. That material instantly became the foundation for her book: “Holding Hope in Our Hands.”

She takes readers on a bewildering firsthand journey of the days and nights of caring and seeking treatment for Nixon.

“I hold nothing back in this book,” Kristin said. “You see what it’s like getting the diagnosis of a terminally ill child; what he went through, what we went through, and what happens when you never give up. You follow our journey as we chronicle the rollercoaster ride of our lives. You learned how we reached beyond traditional medicine and explored alternative options that have some positive results. You will experience every emotion when reading this book. The story is a fight for life, an inspiration of hope, a hand to help others who have gone through similar experiences and a guide of encouragement to follow your instincts.”

A portion of the sales goes back to help Nixon’s medical costs and $1 of each printed book sold will be given back to the hospitals and nonprofits that aided him.

“I wrote this book to help me through the experience and to help Nixon so that one day he will know what he went through and be able to tell his own story,” she said. “We had nothing when we were going through all of Nixon’s medical issues. We couldn’t work. We had so many people do fundraisers for us, who were financially generous and became such great supporters. I never knew how we would be able to give back to them. The book is my way of giving back.”

“Holding Hope in Our Hands” will be available via Createspace and Amazon for $19.95 each; Kindle version $9.99 each. For more information, visit https://www.facebook.com/Nixons-Fight-Holding-Hope-in-our-Hands-474937502650185/

About Kristin Skenderi
Kristin Skenderi is the author of “Holding Hope in Our Hands” which describes the painful, emotional struggle and process of finding medical solutions to prolong the life of her soon to be 4-year-old son Nixon, who suffers from Gaucher Disease Type 2. According to National Gaucher Foundation, Gaucher disease, which has no cure, is a genetic disorder that affects the body’s organs and tissues and those affected with Type 2 have a life expectancy of three-years-old. Kristin and her husband Ozzie take readers on a detailed journey where they reached beyond traditional medicine and explored several alternative options that have produced positive results. The overall messages readers will take away is to follow their instincts, push the envelope, uncover new options, hold hope in their hands, and to never ever give up. The Skenderis reside in Chicago.

For more information about Nixon’s progress, visit the family’s Facebook page: https://www.facebook.com/Nixons-Fight-Holding-Hope-in-our-Hands-474937502650185/

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