About Me

I have been married to the love of my life for allmost 10 years, and am the mother of O, age 9and Zoe , 7.

Both of my daughters have been diagnosed with complex 1 mitochondrial disease. O is a happy and smart , typical little girl who has renal tubular acidosis, asthma, chronic GI issues, fatigue, and generalized anxiety.
Zoe walks very short distances with the aid of a reverse walker and for distance uses a pink power wheelchair. She has hypotonia , continuing atrophy of the cerebellum from stroke like episodes and hypoplasia of the cerebellum and brain stem, generalized epilepsy, continued acidosis, and considerable loss of vision.She is legally blind, and learning braille to prepare for possible vision loss due to a retinopathy.

Our family is very blessed. We live our life day by day, focusing on the positives. Mitochondrial disease is a progressive disease for which there is no cure. Many children are severely affected by this disease and die at a young age. For more information about mitochondrial disease visit www.umdf.org.

My personal experience has led me to research the needs of parents in the special needs community. I hope you enjoy the stories posted here and through reading them, somehow feel less alone if you live with some of these challenges.