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In January 1997 Jeffrey began having problems walking. We took him to see his

pediatrician whom immediately ordered x-rays. The next day we were told x-rays

showed nothing. Lab tests were then performed to see if he had a muscular disorder.

Those tests were negative.

By March 1997 Jeffrey had lost more previously acquired

skills. Where once he could lift a cup with one hand and

drink, it now took both hands. The Friday before Easter

1997 he started having seizures. Our neurologist at the

time whom told us that Jeffrey was just learning disabled

was out of town. Fortunate for us the neurologist on call

got us to the hospital for immediate testing.

A geneticist came and spoke with us. He and the neurologist

informed us that they were going to run tests for genetic

disorders. All came back negative. Then the geneticist informed

us that there was one last test we could have done. It was a

blood test for Infantile Batten Disease. Which was still at the

time experimental. The neurologist told us if he didn't have

Infantile Batten Disease then Jeffrey had something either more

rare or unknown.

May 30, 1997 we were given the official diagnosis of Infantile

Batten Disease. It was honestly not a shock for us. We remained

calm until getting home, where the words finally kicked in.

Infantile Batten Disease is a progressive neurological

disorder.Both parents must carry the defective gene.

Symptoms associated with this disease include loss of

previously acquired skills,seizures,blindness. As well

as other problems. Onset of this disease varies. Generally

between 6 months and of two years of age. The disease

progresses very quickly. Often the child becomes somewhat

comatose in later stages. It has been documented that the

averages ages of death is 5-6 years of age. But there is

no defanite on this.Each child, each case is different.

Jeffrey is now seven years old and has had many problems.

He is fed by g-tube and takes several medications for various

things. He is blind and totally unable to move voluntarily.

Nor is he able to speak or cry. There are times we get alittle

smile or coo from him. Those are very treasured and special.

Hospice comes in and checks on him weekly. They are a

wonderful organization to have.

For more information contact:

Batten's Disease Support and Research Association

2600 Parsons Avenue

Columbus, Ohio 43207 1-800-448-4570