Rare Disease Treated Clinically For First Time At OU Children's
OKLAHOMA CITY - The chances of having a child with Batten Disease are slim. About 20 children in the US are diagnosed each year.
The Logue family of Oklahoma City was shocked when their boy Philip was diagnosed with Batten.
“We had no idea we were carrying this particular recessive gene. No one in our family had ever been affected by it before,” Rebecca Logue said.
The genetic disease causes regression in a child’s speech, sight and movements.
Life expectancy is eight to 12 years, and Batten also causes seizures.
Rebecca and Ben Logue’s daughter, Joyanna was also diagnosed with Logue’s shortly after her brother.
The parents learned they are both carriers of the gene which causes the disease.
However, the doctors at OU Children’s Hospital had some good news to deliver with Joyanna’s diagnosis.
This time, treatment was finally available for the disease.
While it was too late for Philip’s stage of Batten, Joyanna was not only eligible for treatment, but the first to receive it out of trial.
“She was the first patient to be given this outside of the clinical trial,” Dr. Rene McNall-Knapp, an oncologist at the Children’s Hospital at OU Medical Center said.
A team of doctors has been treating Joyanna with injections into her brain every two weeks, and has noticed fewer seizures.
Joyanna’s parents see and hear a difference in her personality.
“She started to gain back some of the movement, and really, even some of the ability to laugh, smile, some of that kind of stuff,” Ben Logue said.
Joyanna’s smile has always lit up the hospital, but now it can do more, as experts around the country can learn from her progress.
The Logues feel the odds finally are on their side.
“We personally witnessed what we felt like, miracles that opened up that opportunity right here, 15 minutes from our house,” Rebecca said.