Feature: With A Warrior’s Heart, 2-Year-Old Ridgefield Boy Fights Rare Disease

Written by Tom Renner, Ridgefield Daily Voice:

RIDGEFIELD, Conn. — Meg and Drew Whitbeck of Ridgefield reacted differently when they learned in February that their one-year-old son, Luke, suffered from a rare genetic disorder, Gaucher Disease.

Gaucher Disease is a rare disease that causes fatty lipid deposits to build up in some organs and bones. It results from not having an enzyme, glucoerebrosidase, that breaks down a fatty chemical, glucocerebroside. Fat-laden Gaucher cells build up in areas such as the spleen, liver and bone marrow.

Only 1 in 40,000 live births suffer Gaucher disease, according to the website Gaucherdisease.org, and symptoms include bone pain and easily fractured bones, anemia, bleeding and bruising problems, and a distended abdomen due to spleen and liver enlargement. The disease is treatable with a costly enzyme replacement therapy, which requires Luke to receive weekly infusions. Their family has established a GoFundMe page to help cover the infusions for Luke, who turned 2 in July. Click here to visit the page.

Now, the family prepares for its first Christmas since his diagnosis, well aware of what’s in store over the years ahead with the boy they call “Warrior Luke.” “We’ve hit our stride as a ‘rare’ family, and feel like we have our feet under us,’’ said Meg, a Registered Dietitian with Ridgefield Visiting Nurse Association. “We know how to handle things in the medical world, and have found support and encouragement from faith, friends, family, our church, jobs, medical team and community.”

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