Almost all of us that share a sibling close in age can recall the years of fighting and bickering with their brother or sister when they were kids. But those fits led to bonds between family members that could never be broken. For Eli and Ella Vivian, those bonds were formed on a platform much deeper than bickering over who got to pick the TV channel that night.
In September of 2012 Becky and Hut Vivian of Oaks, Pennsylvania decided to get her then seven-year-old son, Eli, an MRI when she felt like something was off with him.
That same day the results came back. Eli was diagnosed with Metachromatic Leukodystrophy, an inherited disorder characterized by the accumulation of fats called sulfatides in cells, according to the United St
ates National Library of Medicine.
MLD causes deterioration of intellectual functions and motor skills, such as the ability to walk.
Being a genetic disease, Becky and her husband Hut realized that she would have to get their other three children tested. Two months after Eli was diagnosed, Ella, Eric and Evan headed to the hospital.
On October 8th the Vivians found out that Eric and Evan, the oldest of the siblings, were carriers of the disease, and youngest Ella also had MLD.
“You can imagine it was devastating, but learning that there was no treatment except for bone marrow transplant in the United States was the hardest thing to hear,” a mournful mother, Becky, recalled from memory of that day in October of 2012.
After doing research on the bone marrow transplant option, the Vivian’s found the mortality rate to be a whopping 50%. That’s when they decided to look elsewhere.
The Vivian’s found their light at the end of the tunnel in Milan, Italy. A clinical trial was being conducted for MLD a mere 4,000 miles away from their home. By the end of their treatments, the Vivian’s would travel approximately 16,000 miles in total.
In Milan, Eli and Ella endured heavy doses of chemotherapy, anti
-seizure drugs, and 45 days of isolation.
Eli and Ella share the bond of strength and humility throughout the battle for their lives. Their family and community are the catalysts of their stamina, and are the ones who continue to support them day in and day out.