in funds towards combatting the ill effects the genetic defect was having on their six-year-old daughter, Mila.Battens disease is said to effect one out of every 100,000 children worldwide.“What typically happens with Battens disease is seizures, loss of speech, motor skills and sight, dementia and eventually death,” said Tucker.
Tucker and her husband first became concerned for Michael’s health after noticing his constant eye rolling.“Around the time he was turning five, his eyes started rolling, and we just assumed that it was something new he had learned to do,” Tucker continued. “However, it started happening more and more as he was walking, playing, and eating, and we started to think that this was not normal.”
But Tucker received the shock of her life in April, when the test results showed that she and Bryden were both carriers of type 2 Battens, and had passed their genes along to Michael, who was now stricken with the deadly illness. Following Michael’s grim prognosis, Tucker and Bryden opted to test their daughter Talia, 4, as well as Oliver, for the disease in May.
The results showed that Talia does not have the life-threatening disease; however, she is a carrier. , younger children like Michael and Oliver, who are diagnosed with sickness during early childhood, usually do not live “more than five or six years after symptoms begin.”Michael and Oliver are scheduled to undergo surgeries that will hopefully increase their life expectancies.