Family advocates for statewide testing for Krabbe disease

For every mama, her baby’s smile is a symbol of joy, simplicity and health. So, when Laura Shelton began to notice that her 3-month-old baby Lana wasn’t smiling much, she suspected something was wrong. At Lana’s next pediatric check-up, Shelton mentioned the baby’s lack of smiles and her regression in movement. Almost immediately, the journey to diagnose Lana began.

After the MRI, spinal tap, EEG, EKG and blood test, doctors made a diagnosis. Lana had Globoid Cell Leukodystrophy, better known as Krabbe disease.

It is a degenerative disorder that entails a slow loss of movement, verbal, visual and eating abilities. Krabbe disease is genetic, affecting one in 100,000 births. The average life expectancy is two years.

Currently, there is no cure.

Yet Laura and her husband, Don, remain positive about their baby’s future.

“We’re trying to get out and adventure with her,” Laura says. Museums and zoos are favorites. They strive to create special family memories, such as having breakfast together on Sunday mornings and hosting a huge first-birthday celebration for Lana.

In June, 11-month-old Lana began to use a feeding tube. Many babies with Krabbe disease get a feeding tube at 6 months, but the family describes Lana as a little fighter.

The family has taken up its own fight in Lana’s name. Krabbe disease can potentially be stopped if caught through newborn screenings before the symptoms appear, something the Sheltons want in Illinois.

“If Lana could do anything to help other families in the state not go through this, then I think that’s what she’s here for, to make a difference,” Laura says.

Although Illinois passed a law approving Krabbe disease testing in newborns in 2007, it hasn’t been implemented yet.

For their part, the Sheltons will continue to cuddle and kiss the chubby cheeks of baby Lana, and celebrate the life she is sharing with them.

“Enjoy what time you have with your child,” Laura says. “Every moment is precious.”

How to help

For updates, upcoming fundraisers and to read the family’s story, visit the public Facebook group, Lana Smiles. To donate financially, visit youcaring.com and search for Lana Smiles.

To help with Krabbe disease awareness and research, visit hunteshope.com

In Mom’s Words

Best advice ever received: “‘Take it one day at a time’ and to not get ahead of myself.”

Worst day: “Nov. 23, 2017. I was at work and received a call from her doctor confirming it was Krabbe disease… she basically said Lana would never be able to walk or talk.”

Advice for other parents: “Never give up hope, because I haven’t yet. She’s a strong girl. I believe in miracles; miracles happen every day.”

Biggest hope for the future: “My biggest hope is for newborn testing for Krabbe in Illinois and eventually the nation.”

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