Woman writes of her experience with rare disease

WARRENSBURG Catherine LaFond-Evans spent two decades searching for help for her ailing children. The Thurman resident has now written a book about that search in an effort to raise awareness about mitochondrial disease, which she and her three children all have. My Children and Mito has been published by Lulu, a popular online self-publishing web site, and the book can be purchased at lulu.com as well. LaFond-Evans said that few doctors have heard of mitochondrial disease, which has multiple symptoms. Mitochondria are in nearly every cell in the body, producing much of the energy needed to function and maintain life. Mitochondrial disease can affect all of the bodys life sustaining systems. LaFond-Evans three children, Randy, Brooke and Drew, are all in their 20s and have suffered from the disease since birth. Its been very evident from birth hat something was wrong, she said. They have all had many health issues and over the years, Ive been told that Im crazy or depressed. Several years ago, a handful of doctors finally recognized mitochondrial disease, which mostly goes mis - or undiagnosed. LaFond-Evans has taken her children to specialists in Boston and Johns Hopkins in Baltimore. Its all consuming, she said. Things can change from minute to minute. Her oldest girl, Randy, has the most severe symptoms, and has declined in the past year. Randy and Brooke both have optic nerve disorders and significant immune deficiencies, she said. Randy is legally blind and has braces to help her walk. She said they function at a high level, but not to the level of their actual ages. The number of specialists able to diagnose and treat individuals affected by these chronic often debilitating and devastating diseases is very limited. LaFond-Evans was diagnosed with the disease herself about five years ago, in her mid-30s. I believe getting the rabies vaccine precipitated the disease in me, she said. But so little is known about it, and there is no cure, and treatment is in the form of vitamins, enzymes and supplements not covered by insurance. My Children and Mito is a chronicle of the struggles LaFond-Evans family battled daily for 19 years before being diagnosed with mitochondrial disease. The driving force behind the book is the continued daily frustrations her family faces due to lack of knowledge in the community about mitochondrial diseases. Her book demonstrates the critical continued need to raise awareness of mitochondrial diseases. Throughout the book readers will find helpful information in the form of advocacy and resources. The book is available for purchase at lulu.com, Amazon, Barnes and Noble or Borders. I dont know how its going to go, LaFond-Evans said about herself and her three children. I just keep them as happy as possible.

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