Youngster burdened with rare disease

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Mariah Crawford

Mariah Crawford, 12, once enjoyed cheerleading and playing basketball, softball and soccer. She loved singing in the choir at Madison Rural Elementary and at church.

A rare genetic disease has taken those pleasures and much more away from her.

Mariah, daughter of Cassie and Shane Crawford of London, has Batten disease. Three in every 100,000 children in the United States are born with the disease, a disorder of the nervous system for which there is no treatment or cure. According to the Batten Disease Support & Research Association, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, they become blind, bedridden, and unable to communicate.

For Mariah, the first symptom showed up in 2005 in the form of vision trouble. Doctors misdiagnosed the problem as macular degeneration. The diagnosis of Batten disease didn’t come until last year when Mariah began collapsing and having problems with her fine motor skills and memory loss.

The last two months have been especially hard. Mariah lost her vision completely and took a turn for the worse on Nov. 14.

“She went to sleep the night before and was doing OK. The next morning, she was a different kid,” Mrs. Crawford said.

Mariah spent a week in Children’s Hospital. Seizures continue to affect her brain function, causing changes in her behavior and personality. She lost 16 pounds over the course of her hospital stay, but refused insertion of a tube for administering nutrition. Back at home, she is having hallucinations and has been in a catatonic state.

“Two or three weeks ago, she would still play and talk and sing, but now she doesn’t talk to anyone,” Mrs. Crawford said. Music has been Mariah’s only solace in the last couple of weeks. Her favorite song is “I Can Only Imagine” by MercyMe.

While Mariah suffers with the disease, her family struggles with its financial impact. Mrs. Crawford is taking time off from work to care for her daughter. As the disease progresses, Mariah will need a wheelchair, adjustable hospital bed, physical and occupational therapy, psychiatric help and more. Donations toward Mariah’s medical expenses may be made to an account named for her at Merchants National Bank in London.

Mariah has two siblings, Serena, 8, and C.J., 6, who have tested negative for the disease.

To learn more about Batten disease, log onto www.bdsra.org.
 

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