Angela is 25 years old and has early onset Juvenile NCL. She still has some of her vision; she is losing ground steadily in her gait; cognitive abilities and intellectual milestones are diminishing rapidly. At her last testing, she tested intellectually at 2.5 years and socially at 6 years. 

The disease is affecting her autonomic system first. She lost her large intestine and in October of 1996, it was removed entirely. Now she now has a permanent colostomy. With the grace and dignity I have seen in all our children, she has accepted this life change and bravely gets on with her life the best she can.

She is very loving. Her concern and compassion for people around her is astounding, at least, I'm amazed at her ability to look beyond herself and see the plight of others.  Angela enjoys praying for others and as do we all, she appreciates prayers on her behalf, as well.

Angela sees herself as a caregiver of "handicapped children". She doesn't see herself as handicapped or disabled but instead - inconvenienced. Her daily struggles have increased mightily over the years and she valiantly strives to maintain an attitude of "can do" even if she doesn't feel well.  Her care givers work faithfully to help her overcome the bad days and I thank God for those who dedicate their lives and their hearts to the care of my precious daughter.

As a child, if you asked her about Batten Disease she was 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". Now, a sad, wistful smile is her quiet answer.

Angela knows, as do we all, that this is not a "painless disease".  Her pain consists of many facets but her constant companion seems to be the daily reminders that her world shifts on an almost hourly basis and she can't quite seem to keep her balance physically, in her thought processes or in her daily life.

I admire my daughter.  There is not anything she can do in her life that will ever make me more proud of her than I am right now.  She is my inspiration, my joy, my precious gift from God, my best friend and my smile.

The picture of her above was taken at her Senior Prom in 2001.  She was the "Belle of the Ball" that night.  She is a graduated Senior of Robertsdale High School in Robertsdale, Alabama, 2001.

Alice Owen 
Angela's Mom
E-mail: lady.conure@yahoo.com

September 3, 2006 Revision 1

January 10, 1997 Original

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