Angela is 15 years old and has the defective gene of Juvenile NCL. She still has most of her vision; she is loosing ground steadily in her gait (toddles with help); cognitive abilities and intellectual standing are diminishing rapidly. At her last testing, she tested intellectually at 2.5 years and socially at 10 years. Overall, her mean age is 4.5.

The disease is affecting her autonomic system first. She lost peristaltic movement in her colon about a year ago and in October of this year, due to rupturing of the colon, it was removed entirely and she now has an ileostomy for the rest of her life. She is now beginning to accept "spit ball" as she has fondly named the appliance" as a part of who she is and getting on with her world.

I haven't heard of other children having this problem but somehow I believe it will come about again sometime in the future.

She is very animated and loving. She sang and signed "Jesus Loves Me" and "It's A Miracle" in church one Sunday (Special Education Week) and we caught it on tape, quite by accident (of God?). Instead of complaining about her ailments and illnesses, she simply asks those who will, to pray for her. I stand amazed every time she says something.

Angela sees herself as a caregiver of "handicapped children". She doesn't see herself as handicapped or disabled but instead inconvenienced. Two of her best friends have CP and she loves to do their physical therapy exercises with them at school each day. The teacher took pictures of the exercises, mounted them on a bulletin board and Angela follows the pictures as she very tenderly tends her charges.

If you ask her about Batten Disease she has been known to quickly pipe in with "all that means is that I get to see Jesus before you do, so there!" Other times, we hear "get a life, I have".

Alice Owen (Formerly Davis), Angela's Mom
E-mail: ladyconure@hotmail.com

Dated January 10, 1997.

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