I used to look at my sweet Christine 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, Christine was diagnosed with the most lethal form of mitochondrial disease, Leigh’s 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 Christine 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. Christine’s doctor praised her life by saying: “Like a beacon form 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’s Syndrome on July 18th, 1998. She is deeply missed!
*Christini was our nickname for Christine