A fundraiser for Lana

Rare disease is devastating, emotionally and financially

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By John Rice

Columnist / Staff reporter

When Lana Shelton was born on July 1, 2016, she was by all appearances a normal, healthy baby. Lana continued to thrive and flash her adorable smile. However, the smiling stopped and at her four-month check-up, she was diagnosed with a rare neurological disease called Krabbe Leukodystrophy. The news was devastating to first-time parents Laura and Don.

Krabbe disease is a terminal genetic disorder that, in most cases, causes death by the age of 2. Children who have it are unable to produce the enzyme that produces Myelin in the brain. Without this protective coating on the nerve tissue, the child loses white brain matter. Their central nervous system is unable to function normally. They lose cognitive ability. Lana has regressed to the neurological level of a newborn and she will not progress beyond it. 

As if this wasn't terrible enough, the cost of Lana's care is going to skyrocket. It's estimated that supportive care for a child with Krabbe disease could soar to $700,000 a year, during their brief life. This is why the Shelton and Goodman families are hosting the Lana Smiles Fundraiser at Healy's Westside, 7321 Madison, this Saturday, Feb. 18 from 6 to 10 p.m. 

Lana's mother, Laura Goodman, comes from a family that has lived in Forest Park for three generations. So it made sense to have the fundraiser in the town where they have so many family members and friends. The event will be emceed by Ryan Russ, who also appears in the musical lineup of six bands playing that night. Guests can help Lana's cause by participating in the silent auction. Prizes include tickets to the Blackhawks, Cubs and the hit play Hamilton.

The families not only want to raise money for Lana's care, they want to raise awareness about this deadly disease. Krabbe disease only affects 1 in 100,000 people. In its early stages, it can be treated with a stem cell/bone marrow transplant. But once the symptoms occur, the disease cannot be stopped. That is why the families are using Lana's case in a lobbying effort to have newborns in Illinois screened for this disease. Currently, only four states screen for Krabbe disease at birth. The screening costs only $6-$8 per child. 

On Feb. 12, family and friends gathered at First Congregational Church of Maywood, to celebrate Lana's Dedication. The 7-month-old wore a white gown and the place was packed. Following the ceremony, guests descended to the basement for a banquet. The Goodman and Shelton families are hoping for another large turnout at Healy's this Saturday night.

Online donations can be made at: 

https://www.youcaring.com/lanashetonlauragoodmansheltondonshelton-702809

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