Hope for the Batten Cure is a race for the cure sort of event. This my first run event that I’ve ever signed up for participation. The event is on May14th with the 5k run, which I am signed up for, starting at 9am. They have a 2-Mile Walk, and 1k Fun Run, starting at later times if the 5k run isn’t to your liking. So if you live in the Dallas, TX area, and want to come out for a good cause, this one may be for you. I hope to see you there!
A bit about Batten disease (from the registration site):
Batten disease is a rare degenerative brain disease that affects children. It is always fatal. Children are born normal and reach most developmental goals. When the disorder first manifests itself, the children become blind and suffer different types of seizures which can be hard to control. They begin to suffer cognitive decline, beginning with the loss of short term memory. Many will suffer personality changes that can border on psychotic behavior. Mobility is affected beginning with stumbling and ending with the child being in a wheelchair.
One of the most difficult stages of the disease occurs when the child loses his/her speech. When that is gone, it becomes a guessing game as to the child’s needs, pain, etc. This is followed by the loss of the abilities to eat and drink. Eventually they will be fed through a tube inserted through the abdominal wall.
The disease causes death of brain cells, Death for the child happens when the brain can no longer sustain life.