ROCKINGHAM COUNTY, Va. -- Cheyenne Mullen fought a rare genetic disorder called metachromic leukodystrophy, or MLD, since age six and passed away at 11 years old on Dec. 7, 2012.

Her family said she loved country music, especially Kenny Chesney. Tim Spears, a country singer, wrote a song just for Cheyenne that tells the story of her life.

Jennifer Mullen, Cheyenne's mother, cared for her daughter who brought her joy.

“She just always smiled, always smiled,” said Mullen.

MLD slowly took away Cheyenne's ability to eat, to speak and to move.

“We always had that hope up until the end. I didn't believe it until it happened.”

Good neighbors knew Cheyenne wasn't well, so they held a Christmas party three weeks early this year.

“She got to experience a little bit of Christmas one last time. It means a whole lot because Christmas was her favorite time of the year.”

The family's Christmas tree has been up since October and it is covered in butterflies, the symbol of MLD.

“The support means everything, because I don't think somedays I could get through it
without that.”

Ray Boggs, Cheyenne's step-father, works as a nurse and helped Cheyenne nearly every day.
He said MLD took Cheyenne too soon and he called her diagnosis and death devastating.

“Even when we knew inside that it was time, parts of you just doesn't want to and wants to fix it,” said Boggs.

Her family was thankful Christmas came early this year.

“I'm thankful that I had the time with her I did.”

Cheyenne's family said support from the community has helped them since their daughter's death. Members of the family said they want people to reach out to families who have children with special needs.

MLD affects about one in every 40,000 people. To put that into perspective, that's about one person in the entire city of Harrisonburg.

To read how you can help, go to this website: http://www.mldfoundation.org/

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