Winter wonderland for Montco kids battling rare disease

OAKS, Pa. - December 2, 2012

It was just in October that doctors diagnosed Ella and Eli Vivian with the rare illness Metachromatic Leukodystrophy.

It's a genetic disease that causes degeneration of parts of the brain and central nervous system.

There is no cure and the Vivians are seeking treatment in Milan, Italy.

On Sunday, Becky and Steven Vivian walked through the Wonderland of Wishes with their four kids including 7-year old Eli and 4-year-old Ella.

The idea is based on the Candyland board.

The Greater Philadelphia Expo Center was full of candy canes, chocolate, trains and giant cupcakes.

Eli's guidance counselor says his school Oaks Elementary has done multiple fundraising efforts.

"Wonderland of Wishes for the most wonderful family, we would do it over and over again," said Jennifer McVey.

After the Vivians shared their news, the community responded in a big way.

"The Vivians story got out on Facebook and a lot of people really connected with this family. A lot of people in the community know them and people heard lots of things about them. The people that did know them mobilized quickly," said Jessica Reigner.

The Vivians are grateful for the support.

"I don't know how we would get through this without all these amazing people by our side," said Becky Vivian.

All proceeds from food and game tickets go to the Vivian family. Eli and Ella will head to Italy since there is no treatment being offered in the United States.


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