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I would like to dedicate my book to the people who are an important part of my life, and I consider myself blessed to have the constant love and support of family and friends, around me.

I am forever grateful to the wonderful dedicated doctors who I hold in great esteem, and take such good care of me.

To my beloved daughter Tobi, who is a constant source of strength and joy, my love for her is unconditional and boundless.

My final dedication is to one very special person; my darling husband Brian, who has my unending love and admiration, without whom, my life would not be the same. He is forever steadfast, in my darkest hour, and happiest of moments.


I was born with Gaucher disease, a rare chronic genetic disorder, I inherited from my parents. Diagnosed at the tender age of five, it would be many years later, when married and given birth to our daughter, the first ever medication for this disease was approved by the FDA. In 1991, I started to receive the long awaited medicine, in the form of infusions which replace the enzyme that my body is missing. To date there is no cure for Gaucher Disease, and I will probably be on medication for the remainder of my life.

As if having one chronic disease was not enough, at age 44, I was diagnosed with Parkinson’s. Strange as it may sound, this did not come as a complete surprise. My father was a carrier of Gaucher and had Parkinson’s, and one of my brothers had Gaucher and Parkinson’s.

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