Parents to lawmakers: Make newborn health screenings for Krabbe Disease the norm

DAYTON, Ohio -- Parents in Ohio want lawmakers to require the screening of newborn babies for a deadly disease, as early detection could be the difference in life and death for babies.

According to WHIO , Chasse and Mike Layton's lives changed forever six weeks ago when their daughter, Madison, died 19 days before her second birthday.

Madison got sick when she was about 9 months old, but at the time, her pediatrician could find nothing wrong with her. So, the Laytons took their little girl to Dayton Children's Hospital for a blood test.

Six weeks later, Madison was diagnosed with Krabbe Disease.

According to The Mayo Clinic, Krabbe Disease is inherited, and damages the protective coating of nerve cells in the brain and throughout the nervous system. When the disease develops in older children and adults, it can take many different courses.

Madison's parents believe early knowledge of the disease "would have saved her life."

Neurologist Dr. Daniel Lacey of Dayton Children's is treating two babies who have Krabbe Disease. He told WHIO that symptoms, like seizures and severe irritability, can usually be detected in babies between two and six months of age.

"They can't feed, and the brain just kind of deteriorates," Lacey said. "If the stem cells are given early enough and preferably before the patient is symptomatic, it may not cure the disease, but it may slow it down and prevent some of the nasty symptoms from developing."

The Layton family, along with other concerned parents met with Ohio lawmakers Wednesday, with high hopes for change -- that all newborn babies will be screened for Krabbe Disease.

Stephen and Emma Wendland have a 7-year-old son who is beating the odds after being diagnosed with Krabbe Disease at 8 months old.

His parents told WHIO that they don't want to see other parents "face hopelessness in the face of disease."

 

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