Several fundraisers have been planned to help the family out with medical and other expenses.
The local community has taken up supporting Becky and Steve Vivian and their four children over the last several weeks since people started hearing their story. Now a huge holiday-themed event is taking place on Sunday December 2 from 11am-4pm at the Greater Philadelphia Expo Center. Called Wonderland of Wishes, the event will feature fun activities for all ages including a train ride, cupcake decorating, food, and games. The event is going to feel like walking into a live Candy Land game, with different areas such as the Ice Palace, Licorice Lake, and Lollipop Woods. Admission is free with activities and goods priced at different rates. All proceeds benefit the Vivian family. The Vivians have two children, 7-year-old Eli and 4-year-…
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Two of the Vivians' four children have been diagnosed with metachromatic leukodystrophy, which attacks the brain and central nervous system.
Like most people, Becky and Steve Vivian of Royersford had never heard of metachromatic leukodystrophy (MLD). It wasn't until their son Eli was diagnosed with the rare neurological disorder that they discovered they were each genetic carriers of the disease, which afflicts one child out of 40,000. Earlier this week, they discovered that their youngest child, 4-year-old Ella, is also afflicted with the condition. Their two oldest sons are carriers, as are one in 100 people. Read more about the Vivians and their fight against MLD on Limerick-Royersford-Spring City Patch.
In this Article:
Two children in the same Royersford family are battling a rare illness.
In late September, Becky and Steve Vivian got news that no parent wants to hear: their son, 7-year-old Eli, has a rare illness called metachromatic leukodystrophy (MLD). Becky Vivian started a Facebook group called "Eli's Prayer Warriors" that quickly spread through family and friends, gathering 2,883 "likes". Since then, the Vivians have had their three other children tested. Their two older sons, Eric, 13, and Evan, 11, are carriers of the disease. Their daughter, 4-year-old Ella, was also diagnosed with MLD on Tuesday the 9th. The Facebook page begun for Eli has now become "Eli & Ella's Prayer Warriors" page. MLD is a rare genetic disease that involves degeneration of the white matter of the brain and central nervous system. There …
4:35 pm on Saturday, February 16, 2013
God's grace and peace to you. Ed and Becky Vivian evivian594@aol.com more ›
Sue Bani
10:54 pm on Monday, November 26, 2012
Boy Scout Troop 230 of Limerick will be there to help set-up on Saturday and also to help everyone on Sunday - we continue to pray for a cure but will help make smiles happen and help the children smile! more ›