Brandon and Jeremy have Juvenile Batten Disease, one of four forms of Batten Disease typically found in the U.S. Batten Disease is an inherited genetic disorder that is fatal and has no cure at this time. Clinical trials are underway for Infantile and Late Infantile Batten Disease, and a clinical trial is planned in the near future for Juvenile Batten Disease. Symptoms of Batten Disease vary from form to form, but usually include vision loss, seizures, ataxia, short term memory loss, and loss of muscle control, including the ability to walk, talk and even swallow.
It has been almost two years (June 2006) since Brandon’s diagnosis and his eyesight is about gone. He does remarkably well with the vision he has left. His seizures have been controlled by medication so far. Jeremy was diagnosed almost 5 months after Brandon and with no apparent symptoms at that point. However in the last year his eyesight has significantly decreased and he has started his seizure medication as well.
Despite all this we currently have two happy and otherwise healthy children that we thank God for every day. We have had difficult times over the last few years, but we have met and gotten to know some amazing people and families along the way.
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wendy and Chris Hawkins