How You Can Help Local Siblings with Rare Brain Disease

Eli and Ella Vivian, aged 7 and 4, were diagnosed with metachromatic leukodystrophy in September. The Oaks Expo Center is hosting a fundraiser.

Local mom Becky Vivian says that for a long time she just felt something wasn’t right with her son Eli.

Small signs kept cropping up—a little tremor or something off with his gait—yet she was continuously told it was nothing. After being dismissed as typical developmental delays by several doctors, Vivian finally found a neurologist that would order an MRI. But even this doctor didn’t think the MRI would show anything.

Unfortunately that couldn’t have been further from the truth.

In late September, 7-year-old Eli was diagnosed with a rare illness called metachromatic leukodystrophy (MLD), a genetic disease that causes degeneration of the white matter of the brain and central nervous system. The disease has no cure and is fatal.

After learning Eli’s diagnosis, the family quickly had their other three children tested and to their horror discovered that 4-year-old daughter Ella also had the disease. Older sons Eric and Evan are carriers of MLD but do not have it.

Having learned about the family’s situation, a local group of women immediately sprang into action and began pulling together what is shaping up to be a truly spectacular holiday-themed fundraiser.

Wonderland of Wishes (WoW) is a family event for the holidays that has a little something for everyone. Planned for Sunday, December 2, 2012 from 11 a.m. to 4 p.m. at the Greater Philadelphia Expo Center in Oaks (Exhibit Hall A), the event will feature free admission with activities and goods priced at different rates. All proceeds will benefit the Vivian Family, who is currently trying to get both children enrolled in an experimental study in Milan, Italy.

The Winter Wonderland core committee has the vision of bringing the Candy Land board game to life with various “Lands” packed with things to do and see. Confirmed activities include inflatables, crafts, performances, games, food, and of course a Real Life Santa Claus.

But the group is working on so much more. With donations already pouring in, the event is growing by the day. A multitude of local organizations, companies, and volunteers have already stepped up to donate time and professional services. Of course the group is still looking for donations of time, service, and funds to make this event as remarkable as it has the potential to be.

Any persons or organizations available to donate something to this event should reach out to the group leader, Jessica Reigner (Jessica.Reigner@greenphire.com). And whether you can donate or not, kids of all ages are encouraged to mark their calendars and be there for this special event.

Dave F November 02, 2012 at 12:48 PM
Steve & Becky are childhood friends of mine and they have a beautiful family. If you can find it in your heart to help with any donation please do so. It all helps and even if you help spread the word about their fund it helps tremendously.
. November 02, 2012 at 12:51 PM
This is such a sad story....I will make sure to stop by the Expo on December 2nd to support this family and hope others will do the same.
Megan Inmon November 02, 2012 at 01:02 PM
yes, what a sad story and there isn't a better cause to support than this!!! I will see you Dec 2!!
Wendy McKeon November 02, 2012 at 03:25 PM
We know this family from Little League and what they are going through is unimaginable.If you go to the Wonderland of Wishes web-site you can donate on-line and/or sign up to help. I will be volunteering on Sunday from 11-1..come join me


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