4 out of 4 stars
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Holding Hope in Our Hands is a touching and memorable book of love, hope and faith written by Kristin Skenderi.
Nixon Matthew Skenderi, only child of young couple Kristin and Ozzie Skenderi, is only six months old when he is taken to the hospital because of a lingering cough. After a set of tests, he is diagnosed with Gocher’s Disease (g?’SH?z), a rare genetic disorder caused by deficiency in glucocerebrosidase enzyme, enzyme that breaks down fatty substances which builds up in certain organs, particularly spleen and liver. This build up causes these organs to enlarge and affect their functions. This is a fatal disease and there is no cure.
Despite the doctors’ pronouncement that Nixon may not live long enough to celebrate his third birthday, Kristin and Ozzie vow to never give up until they exhausted every possible option. They search the internet for anything they can find out about the rare disease including a possible cure. They come across two professors in the United Kingdom who, in turn, refer them to another professor of medicine in England. The professor mentions stem cell transplant and shares with them a list of doctors, but only one of which is in the United States. Unknowingly, the professor gives them the greatest gift the couple could possibly receive at the time, hope.
After getting in touch with the doctor in Pennsylvania, the family travels to the East Coast to have Nixon evaluated for his viability for transplant. Nixon undergoes a series of tests and is declared viable candidate for umbilical cord stem cell transplant. With that sliver of hope, the couple decides to move to Pennsylvania for the duration of their child’s transplant process which may take between five and eight months.
This is not just a book. It is actually an experience, an experience that teaches the readers that there is much more important in life than money or other material things. It is well written in conversational tone and is therefore easy to read. It is written with great passion as the author bares her heart and soul and shares her family’s experience to the readers.
Written in chronological order that began when Nixon was diagnosed in April of 2014, the book highlights Nixon’s journey as his family moves to another state, away from their friends and relatives, to a roller coaster ride that is their life. More than baby Nixon’s extraordinary strength and courage in the face of a faceless adversary, the book offers a multitude of life lessons. These include giving up what you are to be what you need to be for the sake of the most important person in your life, to live not day by day but minute by minute, and savoring every moment, every touch, every smile thinking that that moment, that touch or that smile may be the last.
Aside from a few obvious typo errors (like filled with of many anxious and worried parents and we don’t how to console him), I love everything about the book. I, therefore, rate this book 4 out of 4 stars and I recommend it not just to parents but to everyone. This is a book of love, hope, faith and life lessons to live by.
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Holding Hope in Our Hands
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