This search led us to Dr. Stone at the University of Iowa. Dr. Stone is one of the top researchers of inherited retinal diseases in the nation. We made our first trip to Iowa City in January of 2013. It was during this trip that we began the process of genetic testing which would help us determine what was affecting Reese's vision. One February night Dr. Stone called us with the news that would forever change our lives. He informed us that Reese had tested positive for the NCL-3 gene which is more commonly known as Juvenile Batten Disease. At a time when we were trying to deal with the fact that she would be blind, we now faced the news that Reese has a condition that will eventually take her life far too soon. Prior to Reese being diagnosed with Batten disease we, like many people, had never heard of this condition. Batten disease is an inherited neurological disorder. Right now, the only symptom of this horrible disease that is affecting Reese is the rapid loss of vision. Over the course of the next 10 years the disease will cause seizures, loss of motor skills, and mental impairment that will leave her bedridden, all before taking her life.
We are now in the process of assembling a medical team that will help us manage the symptoms of the disease. In June we will be returning to the University of Iowa for a third time to meet with Dr. Stone again, as well as a rheumatologist and neuropsychologist. The goal of this visit is to get Reese started on the CellCept medication. This is an immunosuppressant drug that has shown successes in slowing the progression of the disease in similar patients. This is our HOPE.
All monies raised will go to help offset medical costs, transportation costs for treatment and appointments, family expenses related to adaptations and changes in their home for Reese, supplies and support for Reese as she fights this disease, and any other expenses the family may have in the near future. Please give generously and know that your gift is very much appreciated!
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