Just two months after the Clemson community rallied around a terminally ill baby, the child has, sadly, passed away.
For Stephanie and Jonathan Bolt, daughter Addie Grace was the gift they had been praying for and dreaming of for years. But when she was just three months old, the couple began to suspect their daughter wasn't developing like most babies her age. By the time their little girl reached six months, doctors confirmed their worst fears: Addie was 1 of 100,000 babies in the U.S. diagnosed with Krabbe disease.
According to the Mayo Clinic, Krabbe is a degenerative disorder that affects the nervous system, and sadly, there is no cure. Infants who are diagnosed with this disease are given a 2-year life expectancy.
But for Addie Grace, the fight ended at the tender age of 1. She died peacefully in her sleep Thursday morning, according to a post written by Stephanie and Jonathan on their "A Safe Place for Addie" Facebook page.
"God blessed us with an amazing gift almost one year ago," the post read. "But early this morning, the Lord called Addie home, peacefully in her sleep. As parents, we thank God for the honor of being this little girl's parents. It is an unbelievable honor to be given such a precious gift. Thank you for all of your continued prayers and support. At this time, we ask for understanding and love as we grieve and try to figure out our next steps. This has been our lives for the last year, and now we need to adjust. Thank you for patience and understanding! Love you all!"
There has been an outpouring of support on Addie Grace's Facebook page. "Please pray for the family of Addie Grace," wrote one commenter. "So sad. Another baby lost to the horrible disease of Krabbe," wrote another.
Stem cell transplants have shown some success in infants with Krabbe who are treated before the onset of symptoms, and in some older children and adults.
Now Addie's family members are focused on spreading awareness, because South Carolina doesn't test newborns for the disease, and Stephanie and Jonathan believe treating Addie at birth might have helped prolong her life.
States that currently screen for Krabbe disease include: Illinois, Kentucky, Missouri, New Jersey, New Mexico, New York, Ohio, Pennsylvania, and Tennessee. But If you're having a baby in a state or country that doesn't screen for Krabbe disease, you can order a supplemental screening kit for your child, which includes instructions on how to coordinate with your physician to implement the test.
Hollee Actman Becker is a freelance writer, blogger, and a mom. Check out her website holleeactmanbecker.com for more, and follow her on Twitter at @holleewoodworld.
