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Little boy's legacy is saving other Hoosier children

Bryce Clausen was diagnosed with Krabbe disease when it was too late for treatment.

INDIANAPOLIS — A family's push to get an Indiana law that added three rare, genetic diseases to Indiana's newborn screening panel is paying off.

Bryce Clausen was diagnosed with Krabbe disease, a rare, genetic neurological disorder, when it was too late for treatment. He died from it in April 2019.

Bryce's parents made it their mission to try and help future Hoosiers survive. 

In 2020, Gov. Eric Holcomb signed the bill, and it went into effect in July of that year. It adds newborn testing for Krabbe disease, Pompe disease and Hurler's syndrome in Indiana. The cost is $10.70 per infant, paid for through Medicaid and insurance. The state, to reimburse Medicaid, pays an extra $154,000 per year.

Data since July 2020 shows around 160,000 infants have been screened to date. As it relates to Krabbe disease, 95 samples from the 160,000 were sent for second tier testing. Of those 95, 10 were referred to confirmatory studies and evaluation.

Early detection will give parents whose children might be affected by Krabbe disease a chance to try stem cell transplants and other treatments before symptoms show and it's too late for any sort of treatment. 

According to the Mayo Clinic, initial symptoms include:

  • Feeding difficulties
  • Unexplained crying
  • Extreme irritability
  • Fever with no sign of infection
  • Declines in alertness
  • Delays in typical developmental milestones
  • Muscle spasms
  • Loss of head control
  • Frequent vomiting

As the disease becomes more advanced, symptoms include:

  • Seizures
  • Loss of developmental abilities
  • Progressive loss of hearing and sight
  • Rigid, constricted muscles
  • Stiff, fixed posture
  • Progressive loss of ability to swallow and breathe

The Mayo Clinic said in later stages of the disease, "children become incapacitated, are confined to their beds and eventually lapse into a vegetative state."

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