Magazine article The Exceptional Parent

The Power of Parent Persistence

Magazine article The Exceptional Parent

The Power of Parent Persistence

Article excerpt

When we think of a hero, we often think, a person who is larger than life. Heroes, however, do walk among us in everyday life. I would like to tell you about one who is very much a part of the Exceptional Parent family: Julie Venners Hacker, our associate publisher. She has been selected as the recipient of a Joseph P. Kennedy, Jr. Fellowship in Public Policy. Julie has demonstrated what I like to call the Power of Parent Persistence. On January 1, 2000, Julie will begin the one-year fellowship in Washington, D.C. There she will continue to learn and grow, and acquire new skills in advocacy on behalf of those with disabilities. For Julie, and for Exceptional Parent, this is a tremendous honor and we are very proud of what she has accomplished and profoundly grateful that she has been such an integral part of the Exceptional Parent family. We know that she will continue to be successful and that she will make a significant contribution in the lives people with disabilities.

As Julie accepts the heartfelt congratulations of all those who wish her well and prepares to take on her new responsibilities, I would like to share some perspectives that are constant reminders of the journey that has led to this outstanding achievement.

I first met Julie at a National Organization for Rare Disorders (NORD) Conference in Dallas, Texas in 1996. With her was her daughter, Brielle, then 2 years old, who had been diagnosed with mitochondrial myopathy. Julie had come to the NORD conference to gain knowledge and gather support to help her in dealing with her daughter's disability. What struck me immediately about Julie was her energy, devotion, and commitment. And, I was captivated by Brielle; though her disease tired her out much of the time, her bright blue eyes were always shining and she could always muster a smile that melted your heart.

A story to share

Julie told me how little was known about mitochondrial myopathy and how she wanted do something about that. She had already created her own non-profit foundation, the Juvenile Undiagnosed Mitochondrial Problems (J.U.M.P.) Foundation to help raise awareness and fund research into this mysterious disease. She also told me about Brielle and her condition. In 1996, Brielle's medical prognosis was not good. Mitochondrial myopathy is a hereditary disease in which the mitochondria (the powerhouse of the cells in our bodies) do not produce enough adenosine triosphate (ATP), which gives the body its energy.

Some leading neurologists told Julie that Brielle would never walk and would always have severe motor and intellectual delays. As an infant, Brielle could not eat solid foods and Julie was told that her daughter would need to be tube fed. But Julie was unwilling to accept that without a fight. Instead, with incredible patience, love, and dedication, she sat for hours on end holding and feeding Brielle the only thing she would eat--cream from those small containers used for coffee. Brielle began gaining strength this way and has not needed a tube. Eventually, when it was discovered that she had carnitine deficiency, Brielle began receiving medication which dramatically improved her condition.

I was resolved to have Julie tell her stow in print--and she did. The article in our May 1997 issue served as the introduction to Exceptional Parent's three-part educational series on mitochondrial and metabolic disorders, which Julie helped coordinate. This special report served to increase awareness, among physicians and parents alike, of this pervasive and debilitating condition. …

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