Thursday, April 24, 2014

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Giving thanks for ‘Sweet Marley’

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TWC News: Giving thanks for ‘Sweet Marley’
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In a small yogurt and sandwich shop tucked around the main Fredericksburg drag down Llano Street, is a little girl named Marley.

She is often the main attraction at the shop.

"She just has such a great smile and such a great outlook on life. She just really touches everybody that meets her,” Marley’s mom Crystal Bedford said. “It's really fun having this place and you know, having new people come in that don't know about her and reading the Rhizo kids wall, it's really cool."

Sweet Marley's yogurt shop is named for Marley Bedford. Marley was born with a disease called Rhizomelic Chondrodysplasia Punctata, or RCDP. It's a rare genetic disorder that can cause painful bone and joint deformities, mental retardation and pulmonary complications, to name a few.

Marley's one of fewer than 100 children in the world at this moment with the disorder.
Sixty percent of kids with RCDP die in the first year, and about another 40 percent die in the second year.

Marley is two-and-a-half years old.

"The statistics say that they will never reach any developmental milestones,” Crystal said. “Granted, she's done everything late, but she's rolled over, crawled, she talks, she's done everything."

Marley has even walked. After doing so on dislocated hips for six months, she went through reconstructive surgery. The little ball of strength was also born with cataracts, and had corrective surgery at just three months old.

"She's just adapting every step of the way to her circumstances," Marley’s dad Jonathan Bedford said.

But it was this time last year—Thanksgiving—when the Bedford's didn’t know if Marley would make it.

Marley's parents, Crystal and Jonathan, couldn't wake her up. She was rushed to the hospital due to hypoglycemia. Doctors weren't able to explain what caused the episode.

"That was definitely the closest I ever felt where I was like, 'Oh no,'" Jonathan said. "It became very real that one day, we may go in there and she won't be there."

The Bedford's are hopeful Marley will continue to beat the odds, and grow up to one day help run the shop that was started because of her.

"She's living life. She's bright, she's vibrant, she's full of life,” Crystal said. “We don't know what tomorrow's going to bring but today, she's really taught us that it's one day at a time."

Marley undergoes three to four different therapies each week. A 5K run called “Miles for Marley” was started to help raise money and awareness for the disorder. ClientIP:, UserAgent: CCBot/2.0 ( Profile: TWCSAMLSP