Clemson band holds surprise parade for baby with terminal disease

(Courtesy: WSPA)

CLEMSON, S.C. (WSPA) — It’s not every day the Clemson spirit squad band and mascot lead a parade to the home of a 10-month-old baby. But then again, Addison Grace is one unique little girl.

“It just filled my heart,” said Stephanie Bolt, Addie’s mom.

“Clemson is coming to them, so this is going to be cool,” said Jill Lancaster, ahead of the big surprise.

Addie was diagnosed with Krabbe disease at 3 months. It’s a rare fatal genetic disorder that destroys the protective coating of nerve cells in the brain and throughout the nervous system. Babies with the genetic disorder usually don’t make it past age two.

“She was all smiles and unfortunately the disease just takes that,” said Tammy Maddox, Addie’s grandmother.

“She is comfortable. She is loved obviously and so that is all we need,” Jonathan Bolt, Addie Grace’s dad added about their last few months.

Her parents don’t know how long she has, so early on they made a bucket list for their baby girl. On the top of that list was to take her to a Clemson football game. But that dream was squashed, when Addie Grace’s condition got worse.

“We’re going to take my daughter and she is going to wear a little cheer leading outfit. It’s going to be so adorable, right?,” Jonathan asked. “And then it was like, well all of that is not going to happen now.”

That is until Sunday afternoon when the Clemson band cheerleaders and Piedmont community brought the game to her. Hundreds gathered to cheer on the family. Addie even got a signed football with well wishes from Clemson Coach Dabo Swinney.

“To walk out and see so much support and love is amazing,” said Stephanie. “This is the coolest thing that has ever happened to me,” Jonathan added. “It is incredible.”

The parade came as a total surprise for the Piedmont couple. But they say #TeamAddieGrace, their friends, families and strangers, has been surrounding them with support since day one.

“You know we hear so many bad things on the news, and this is probably one of the best stories that everyone needs to hear,” said Lancaster.

Now the family just hopes her story of love and courage will continue to swell. They hope Addie Grace’s life will help raise awareness for the disease.

“It is absolutely amazing, just heart touching. Addie has a definite purpose here,” said Maddox. “God is in control of this and it is just amazing how many lives she has touched.”

The big surprise was actually set up by a man in Pennsylvania John Neal and the Clemson band director. Neal lost a child to Krabbe disease and has become an advocate for other families. He met the bolt family on Facebook and says he wanted to help fulfill their bucket list.

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