Lubbock family exploring options for baby girl with rare condition

Local News

LUBBOCK, Texas — A Lubbock family is looking to get treatment for its baby girl as soon as possible after she was born with a rare condition.

Three-month old Lucy was born with Arthrogryposis multiplex congenita (AMC). According to the family, the condition involves curved or hooked joints, and limited range of motion in the joints. Baby Lucy is affected in all four of her limbs.

Although she was born with a disability, Lucy’s parents Taylor Charles and Anthonie Culp said she is a very happy baby.

“She’s her own personality, she really is,” Culp said.

Lucy’s grandmother, Tiffany Charles, said the condition is rare, affecting one in three thousand newborn children.

“Lucy doesn’t get genetic testing until June, and so we don’t really know for sure if hers is genetic or if it’s just a birth defect which can be caused by lack of fetal movement in the womb,” Tiffany said.

Lucy’s disability prevents her from being able to move her arms or legs, and her hands and feet are clubbed.

Taylor said she found out Lucy’s hands and feet were clubbed during her pregnancy, but until she was born, her family didn’t know the extent of her condition.

“My initial reaction was–I was very upset about it. I think I cried,” Taylor said.

In December the family took Lucy to Dallas for a consultation, but were told they would not be able to begin treatment right away.

“They don’t want to start any treatment on her until she’s 18 months to two years old,” Tiffany said.

The family continued to do its research, and gained support from others who had also been affected by the disability. They were suggested a physician in Florida–Dr. David Feldman, who specializes in arthrogryposis.

“He will start working on children as soon as we can get them there,” Tiffany said.

Wanting the best care for their baby girl, the young parents hope one day Lucy will be able to walk, feed herself and play like any other child.

“Starting now, you’ll have less problems than in the future, than if you were to start older,” Taylor said.

The family plans to head to Florida on March 18. The family said it will spend two months there while Lucy receives treatment.

To help with expenses, the family has started a GoFundMe page. You can access it here.

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