“No surrender” to CDG

| Written by Helen I. Hwang
Everlee Vittletoe, a child with CDG

From a farmhouse in rural Iowa, Crystal Vittetoe is fighting for her two babies afflicted with congenital disorders of glycosylation, known as CDG. She and her family have raised over $37,000 from a single fundraiser, and the donations keep coming in. “If we don’t fight for research, we are surrendering to CDG,” says Vittetoe.

“What Crystal has done for our research at the Institute is incredible. She’s raised enough money to pay for half a postdoc’s salary to do research for one year, and now we need to find the other half,” says Hudson Freeze, Ph.D., director of the Human Genetics Program at Sanford Burnham Prebys Medical Discovery Institute (SBP). “We have so many projects we start and want to complete. We need more hands on the projects. And if a family needs help, we don’t turn anybody away,” he says.

CDG is a collection of genetic diseases that causes mental and physical developmental issues, which leads to severe damage to multiple organs like the liver, heart and intestines.

The Vittetoes have two young children with CDG—two-year-old daughter Everlee (in the photo above) and one-year-old son Breckyn. Vittetoe drove from Iowa to SBP in La Jolla, Calif., for the annual Rare Disease Day Symposium at SBP. There, she met other families, scientists, doctors as well as Freeze to learn about the latest research and treatments that can help their kids cope with her illness. Worldwide, there are less than 1,500 known cases of CDG where children are born with the genetic disorders.

Vittetoe realized from the family’s visit to SBP that much more research was needed to figure out why CDG happens and how to lessen the her children’s suffering. She was inspired to raise money for the Rocket Fund, in honor of John Taylor (Rocket) Williams IV who would’ve turned 10 years old this year. Sadly, he passed away at the age of two.

In the past year, Everlee has been hospitalized six times. During one episode, she was having an hourly seizure for 24 hours with the last one enduring for 3.5 hours. “It’s so stressful, no matter if she’s having a stroke-like episode or just needs fluids,” says Vittetoe.

With the help of family and friends, Vittetoe held a dinner and silent auction at Lebowski’s Rock ‘N Bowl in her hometown of Washington, Iowa with a population of just over 7,000. The three-hour inaugural event raised a phenomenal amount of money that even surprised Vittetoe. “We were blown away,” she said.

The bar donated 15% of the tab and a friend, who’s also a singer, volunteered the entertainment. Over 300 people contributed to a free-will dinner donation for delicious pork loin from the family’s hog farm and scrumptious sides whipped up by the children’s grandmother.

Substantial seed donations, along with gifts from local businesses, raised an enormous amount of funds at the silent auction. The Vittetoes have been farming in Iowa for generations, and Crystal’s husband Jonathan approached the local seed dealers who all said “yes” to helping out the kids. And of course, neighborhood farmers came to support the Vittetoes who always need seed for their crops.

People contributed checks from $10 to $5,000, and every dollar counted. Other families with CDG children drove over six hours from as far away as Minnesota and Illinois to show their support.

The giving doesn’t just stop with the fundraiser hosted by the Vittetoe family. Recently Crystal’s grandfather passed away in Colorado and the family asked for memorial donations to the Rocket Fund.

Vittetoe says, “It’s your babies and if you don’t do something, you’re just waving the white flag. We’re not waving the white flag. We just want to do something for them.”

Note:

The next SBP Rare Disease Day Symposium will be held on February 24, 2017. The day-long event will focus on Alagille syndrome, a genetic disorder that causes liver damage due to abnormalities in the bile ducts, which carry waste from the liver to the gallbladder and small intestine. For more information, click here.

Photo credit: Drish Photography.