For Becky Vivian, mother of four and the driving force behind Eli and Ella’s Prayer Warriors, the idea of genetic testing barely crossed her mind. “Yes, my doctor presented the idea of genetic screening but we talked about family histories, and I thought no one in my family has cystic fibrosis… I’m not Jewish… What I failed to realize is that creating a family requires two people coming together and you have no idea what that could potentially mean.”
After Eli was diagnosed, Vivian had her three other children tested. Sons, Eric and Evan are carriers of the disease – like Becky and her husband Steve – while the youngest Vivian, daughter Ella, has MLD but is not symptomatic. After learning of Eli and Ella’s diagnosis Becky Vivian launched Eli and Ella’s Prayer Warriors, a page on Facebook dedicated to her children, promoting awareness of MLD and genetic testing. So far since the page’s inception several weeks ago, Eli and Ella’s Prayer Warriors have garnered over 4,000 followers on Facebook and unprecedented support from the local and global community.
Like any mother, Vivian strives to provide her children with the happiest and healthiest lives possible. Right now that means working tirelessly to get them into a gene therapy clinical trial in Milan. Beyond helping her own children, Vivian hopes that the Prayer Warriors will help to raise awareness and support for the other families affected by MLD in addition to “teach[ing]doctors’ offices to really go in to genetics, not just a family history, but explaining what it means to be a carrier and what happens when you put two people together.”
For more information about the Vivian family and ways you can help, visit Eli & Ella’s Prayer Warriors. The Vivian family will also be holding a fundraiser on November 17 in Phoenixville, Pennsylvania. For more information on MLD and other ways you can get involved, visit the MLD Foundation’s website.