Celia took lots of medicine, her food had to be pureed, and she lost the ability to drink even thickened liquids. She enjoyed an occasional stroller ride around our neighborhood, and a dip in her grandparent’s hot tub once in awhile, but she favored snuggling on someone’s lap above all else. She eventually lacked any purposeful movement, her fight to crawl merely a distant memory. Near the end she slept much of the day, but she smiled a lot too. We cherished her, and the time we had with her.
Celia had been under the care of Hospice since her diagnosis, so for nearly three years. She died peacefully, at age four, on January 15, 2012.
Batten Disease is rare, about 2 in 100,000, and there are only about 150 children living with it in the US. Sadly, families may have more than one affected child. At this time NCL is always fatal, so we were relieved to learn that Celia’s younger brother, Tucker, does not have Batten Disease, and were blessed to welcome Tolliver, another healthy little brother, in time for he and his sister to meet.
Jenni & Andy
updated February 2012
Gone one year, Our Missing Girl, January 2013
Read more about Celia in a Special Needs Spotlight at This Little Miggy Stayed Home (April 2013)