According to WJLA ABC 7, a couple in Maryland is pushing to change the state law to include Krabbe in screening for newborn babies. If implemented, Maryland would join four other states that currently test for Krabbe, and six diseases total would be screened if the law is changed, at an additional $4 or $6 per newborn.
The parents at the forefront of this effort are Kathleen and Ben Smith, who were directly affected by Krabbe disease. When their daughter, Lily Smith, was first born, she appeared to be healthy; however, at five months, her parents noticed something was wrong.
“She was getting really tight, fisting. The pitch of her cry changed and it was at that point that we really got concerned,” Kathleen told WJLA.
After extensive testing, Lily was finally diagnosed with Krabbe, a rare genetic disease that affects muscle tone, sight and hearing. A cord blood transplant and 24 months later, Lily is still alive, and the disease has stopped progressing. Lily is now in a pediatric wheelchair, and receives medicine six times a day.
“It’s so painful for them,” Kathleen said. “It’s such a horrible, horrible disease. It makes them so uncomfortable.”
Lily’s parents are now spearheading the effort to change the law to include Krabbe in the screening of Maryland’s newborn babies.
“We feel that adding Krabbe to newborn screening in the state of Maryland could potentially save lives,” added Kathleen. “We want her life to have changed something in Maryland and even nationwide.”
What Should I Do If My Child Has Krabbe Disease?
As injury attorney Paulette Chapman states in the video above, birth injury medical malpractice cases usually occur due to a failure to treat the victim in a timely manner. If you believe your child may have suffered a preventable birth injury like Krabbe disease, call our firm today for a free consultation. We can assist you in determining whether you are due compensation for your child’s condition.
Did You Know: Krabbe disease affects about 1 in every 100,000 people in the United States.
Source: http://www.wjla.com/articles/2014/02/maryland-parents-advocate-for-krabbe-disease-screening-100642.html, http://www.mayoclinic.org/diseases-conditions/krabbe-disease/basics/definition/con-20029450