Lana Katherine Shelton lost her struggle with Krabbe disease on Jan. 1, 2018. The 18-month-old from North Riverside was the daughter of Donald Shelton Jr. and Laura A. Shelton. She died peacefully in their arms. 

Laura Shelton is a member of the Goodman family, longtime residents of Forest Park. Shelton told the Landmark’s sister paper, the Forest Park Review, that she was determined Lana’s death would not be in vain. 

“Due to Lana’s diagnosis and the Chicago Tribune article, ‘Doomed by delay,’ I along with five other Krabbe families were invited to testify at the state capitol in Springfield in early October 2017,” Shelton said. “It was because of our testimonies that the Department of Public Health director finally pushed to implement the screening program.”

Krabbe disease is a rare neurological disorder that can be treated if it is diagnosed early. By the time symptoms appear, it’s too late to give the stem cells from umbilical cord blood to reverse its devastating effects. The children become paralyzed, blind and deaf and finally are unable to breathe.

Shelton said that the testimony of the Krabbe families resulted in a law that every newborn in the State of Illinois as of Dec. 11, 2017, will now be screened for Krabbe disease. 

“Lana’s legacy is making sure that no other family in Illinois will have to endure the pain and heartache of this terrible disease,” Shelton said. 

She advises parents to take advantage of this screening.

“If there are parents that had their newborn prior to December 11, 2017 and suspect it, please seek a neurological evaluation ASAP,” Shelton said. “There may still be a chance for a cord transplant if symptoms are not too severe. Or they can order a screening packet from Hunter’s Hope, if they are expecting.”

For the Shelton family, Krabbe disease wasn’t only devastating physically and emotionally. They incurred staggering medical costs. To defray these costs, they are holding the Lana Smiles fundraiser at Healy’s Westside, 7321 Madison St., on Saturday Feb. 10, from 6 to 10 p.m. Tickets are $50 at the door.