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Rare Disease Makes Family into 'Warriors'

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 are treatments for the disease, but no cure yet. 

Becky says her mission in life, regardless of what happens with her children, is to get the word out about this disease and the importance of genetic testing.

MLD

According to the MLD Foundation, the disease is often misdiagnosed as cerebral palsy or ADHD. In adults, it can manifest as psychological symptoms. 

Becky says that she just "felt something was wrong with Eli" for the last several years. 

"He would have little hand tremors, his gait wasn't the same as his brothers'", she said. 

Becky's insistence on getting her son tested led them on what she refers to as a "roller-coaster ride" of tests and doctors. 

Two neurologists told her they thought Eli was a normal, if slightly developmentally delayed, little boy, but Becky kept pushing. 

Finally, a blood and urine test and a consult with a metabolic disease specialist at Childrens' Hospital of Pennsylvania led to the MLD diagnosis. 

Becky said that she and her husband are both MLD carriers. Basic genetics explains that when two carriers have a child, there is a 25 percent chance that child will have the disease. 

Becky says she wishes she had accepted the offer of genetic testing when she went through pregnancy. 

"It's not about what runs in your family," she said. "I thought, cystic fibrosis doesn't run in my family, we didn't need to be tested."

The important thing, Becky said,  is to find out if a couple are carriers of a disease like MLD. The Foundation's website says that while the birth rate for children with MLD is 1 in 40,000, which classifies it as a rare disease, it's estimated that 1 in 100 people are carriers of the defective gene. 

Genetic therapy hope

Treatment options for MLD are few. A bone marrow transplant is one option, but that requires immunosuppressant therapy and months of followup treatment. Gene therapy, using the patients' own genetically modified stem cells, is another option.

There is a genetic therapy trial in Milan, Italy, that is showing promising results in kids with MLD. One child who went through the therapy currently has no signs of the disease following treatment.

The Vivians were recently told that Ella would be eligible for the trial, but Eli would not due to his age. 

Becky says she isn't giving up on getting Eli accepted. 

"I sent a letter, and we really need prayers that [they] will reconsider taking Eli," Becky told us.

'Blown away' by support

Becky says her faith and the support from the community is what is getting her through these days. 

"I have great faith, between my God and my family and friends, that I can get up and breathe and find a way to get through every day," she said. 

13-year-old Eric's elite baseball travel team, the Mustangs, have changed their name to "Eli's Warriors." 

Becky says the name change was the idea of coach Len DeCurtis, who also got the team new shirts with an Eli's Warriors logo on the front and a cross and the name "Vivian" on the back. 

DeCurtis also spearheaded selling the t-shirts as a fundraiser to help the Vivians with their out-of-pocket medical costs. An order was recently placed for 400 shirts.

The family participates in the Royersford Halloween parade every year, with the Lewis Environmental float. This year, they'll be wearing the shirts that DeCurtis had made. 

"There are no words to describe how blown away I am at everyone reaching out to us," Becky said. "I feel like all the good I've tried to do all my life is coming back to me."

Keep up with Eli, Ella and the rest of the Vivian family at the Eli & Ella's Prayer Warriors Facebook page. 

Becky Vivian October 12, 2012 at 06:21 PM
Thank you for doing this story on my family! My goal is to get people to realize that this is a completely preventable disease with genetic testing before getting pregnany. Thank you!
Teryn Suhr October 13, 2012 at 06:40 AM
For more information about MLD please go to http://MLDfoundation.org There are many other families like the Vivian's who are battling MLD. We C.A.R.E. about all of them and are there to support them.
Teryn Suhr October 13, 2012 at 06:42 AM
For more information about MLD please go to http://MLDfoundation.org There are many other families like the Vivian's who are battling MLD. We C.A.R.E. about all of them and are there to support them.
David Middleton October 14, 2012 at 01:08 AM
We here in Exeter and Douglass ille have you and your amazing kids in our prayers. God bless you all!
edward vivian February 16, 2013 at 09:35 PM
God's grace and peace to you. Ed and Becky Vivian evivian594@aol.com

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