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Perfectly Flawed: Living With Genetic Illness
This is an extraordinary and moving account of a family coping with Friedreich's Ataxia, a debilitating genetic illness. It describes how Krystie and her family coped with the diagnosis, the intensive medical treatment that followed and her battle to receive mainstream education. Krystie's bravery and zest for life is an inspiration to us all, but especially to those facing a diagnosis of genetic illness. "My future's full of uncertainty. Sometimes I worry that because of my illness, I won't be able to do much for myself later on in life; that all my days of fun have been and gone. But I realise that actually that isn't true. There's always another happy day just around the corner. Life is for the living, and I refuse to sit back and allow everyone else to move on without me. . But I do know one thing, whatever happens, I won't waste a second of my life, not ever " Krystie Maddox-Lue, 2006
152 pages, Paperback
First published May 30, 2006
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February 28, 2015
Inspirational!
This is the astonishing personal account of the courage, determination and perseverance of the author as she battles her way through a life that has more than its fair share of obstacles. The main subject of the book is the plight of her daughter, Krystie, who has been diagnosed with Friedrich's Ataxia, a crippling and life-shortening genetic illness. However, from childhood, Molvia has suffered occasional family tragedy and near-tragedy.
When Krystie is born, Molvia's instinct and previous experience tell her that there is something amiss. The medical experts think that they know better, but they are proved to be wrong. As Krystie grows up, this is a pattern which is often repeated. Molvia researches all the possibilities and analyses the best path for her daughter.
Krystie becomes as determined as her mother. She insists on as much independence as possible and succeeds at home, socially and at school in the face of adversity. Her awareness of her condition strengthens her resolve to milk every drop of positive experience out of her life. She has probably already achieved more in her life than people who are three or four times her age.
Whilst reading this book, I was reduced to tears on more than one occasion. These were not tears of sadness but of joy as I shared Molvia's pride in Krystie's achievements.
Molvia's account is interspersed with Krystie's own versions of events and is nicely rounded off with the recollections of one of Krystie's elder brothers.
There are some tiny discrepancies in the chronology of the account, but this just proves what the reader already knows; that Molvia is human.
You must read this book. Whether you are living with genetic illness in your family or not, you will be inspired and filled with great hope.
This is the astonishing personal account of the courage, determination and perseverance of the author as she battles her way through a life that has more than its fair share of obstacles. The main subject of the book is the plight of her daughter, Krystie, who has been diagnosed with Friedrich's Ataxia, a crippling and life-shortening genetic illness. However, from childhood, Molvia has suffered occasional family tragedy and near-tragedy.
When Krystie is born, Molvia's instinct and previous experience tell her that there is something amiss. The medical experts think that they know better, but they are proved to be wrong. As Krystie grows up, this is a pattern which is often repeated. Molvia researches all the possibilities and analyses the best path for her daughter.
Krystie becomes as determined as her mother. She insists on as much independence as possible and succeeds at home, socially and at school in the face of adversity. Her awareness of her condition strengthens her resolve to milk every drop of positive experience out of her life. She has probably already achieved more in her life than people who are three or four times her age.
Whilst reading this book, I was reduced to tears on more than one occasion. These were not tears of sadness but of joy as I shared Molvia's pride in Krystie's achievements.
Molvia's account is interspersed with Krystie's own versions of events and is nicely rounded off with the recollections of one of Krystie's elder brothers.
There are some tiny discrepancies in the chronology of the account, but this just proves what the reader already knows; that Molvia is human.
You must read this book. Whether you are living with genetic illness in your family or not, you will be inspired and filled with great hope.
Displaying 1 of 1 review