In Memory of Christine Shimizu
I
used to look at my sweet Christini and wonder how such a tiny little girl could
bring so much love and warmth to the people around her. She had a heart filled
with magic and life and she brought a smile to the face of everyone who knew
her. I was truly blessed as a mother to have been given a daughter who brought
so much to our lives in her two short years, and our memories of her will last
forever.
At 11 months of age, Christini was diagnosed with the most lethal form of
mitochondrial disease, Leigh Syndrome. Despite everything we read about this
catastrophic disease and knowing her prognosis was poor, we decided we were not
going to succumb to this disease without a fight. We would provide our Christini
with the one thing we knew we could do for her, and that was to give her a
positive environment in which to live and cherish each and every moment with
her. Our one goal as a family was to make her smile – and that we did.
The
only evidence that she needed a little more help than other children to
thrive and grow, was a feeding tube taped to her cheek. But thrive she
did, and grow she did. In her last year, she reached our goal weight of 20
pounds. Her cheeks were fuller, her legs stronger, and her smile bigger.
She scurried around the furniture, laughed with her sister, and played
with her brother. She had a cheerful innocence and her little spark of
mischief brought joy and hope to all who cared for her.
She
was an inspiration in many ways to everyone who got to know her.
Christini’s doctor praised her life by saying: “Like a beacon from a
lighthouse guarding a rocky shore, she helped cut through some of the mist
surrounding these devastating disorders. She helped her doctors see new
ways to treat her disease, sparking new ideas in research. And in so doing
helped guide the way to a better life for many other children yet to
come.”
I am now focused on raising awareness and funds to support research done on mitochondrial diseases and efforts to prolong a child’s life while a cure is being sought.
The Christini Fund has been formed in the memory of my daughter, Christine, who lost her battle to Leigh Syndrome on July 18th, 1998. She is deeply missed!
Debbie Shimizu