The Watson Family Puts a Face on Juvenile Batten Disease

This family turned to Texas Children’s for help in their battle against batten disease.

My name is Melinda Watson, and I’ve seen firsthand how staff at Texas Children’s can make a difference in the “whole” child, not just a disease. On February 18, 1999, my two children, Luke and Rachel, were diagnosed with juvenile batten disease—I refuse to capitalize the name of this ugly disease that robs children of their mental and physical abilities.

The last time I took Luke and Rachel to Texas Children’s to see Dr. Gary Clark was on April 30, and again their treatment was incredible. Both of my children have declined in the past year. Rachel has trouble walking, and both she and Luke are blind.

The staff met us when we arrived at the hospital and helped transport the children from the car to the clinic. The nurse who escorted us remembered the children and interacted with them the entire way. We were helped to the examination room as well. You have no idea how wonderful it is for just five or ten minutes to have someone help us with their care! I’ve been so dismayed at other doctors’ offices to have a nurse walk ahead of me with no thought to help as I struggle to lead two blind children, one of whom doesn’t walk very well.

The laboratory staff came to us rather than making us transport the children again. And everyone took time to speak to Luke and Rachel and make them laugh, if only for a moment. When it was time to leave, they called for our car and helped us walk the children downstairs. My husband, Sam, accompanied us, and he was amazed at the care they received.

We are excited to be working now with the Beyond Batten Foundation, which together with James and Cherie Flores, has pledged a $2.5 million gift to the hospital’s new neurological research institute. We are very excited to have a Texas institution researching this disease.

Because there is no cure, the bottom line for me now is that unless research goes faster, I will lose my two precious children. Texas Children’s Hospital cannot yet cure Luke and Rachel, only manage their symptoms. Therefore, the care we receive along this scary, sad, amazing journey is what truly matters to my family. Thank you for having such a great staff.

Melinda Watson