In 2012, James was told the shocking news that her first-born, Elise, had suffered mild brain damage while in the womb resulting in developmental delay. In 2014, after admitting her daughter to the hospital with abnormal bruising, James learned that Elise also had the ultra-rare autoimmune disease, Atypical Hemolytic Uremic Syndrome (aHUS). The snowball effect continued for James' family when just three years later in 2017, her husband James Shadinger was admitted to the hospital. Arriving at the ER in kidney failure, he was told the news he also has aHUS. Despite the genetic nature of the disease, they are the only known family to have a parent and child with aHUS. With numerous songwriting credits to her name, most recently Danny Gokey's hit song, "The Comeback," James' newest single, "Born To Bring The Light," recently hit Top 10 on Australia's TCM chart. James describes her latest as "a counter to the wrecking ball that wanted to rip apart my life and heart."
"It is estimated that for every 1,000,000 people, there are two with aHUS. To have two people in my own family makes us the ultra-rare of the ultra-rare. It is because we are so rare that people want to hear our story. Only God could turn something so negative into a positive," said James. "The past couple of years, I have watched our story become a part of a much bigger story, and we are honored to join the fight."
James has spent the past few years sharing her story, advocating for those also affected by ultra-rare diseases, many of which require some of the most expensive medication in the world. In Washington D.C., James has lobbied in support of The Access to Marketplace Insurance Act, a bill that would remove a current restriction allowing insurance agencies to reject charitable patient financial assistance. Most recently, James spoke at Alexion Pharmaceuticals' National Sales Conference, where she shared the story of her family's journey with aHUS to over 400 employees.
Alongside her lobbying efforts, James recently took to social media imploring fans to tweet at their local representatives to sign on to The Access to Marketplace Insurance Act. "Currently there is a misguided federal rule that allows health plans in 42 states to deny coverage to patients simply because they receive help from charities. These insurance companies are allowed to reject third party payments made on behalf of chronically ill and rare disease patients. This feels criminal because it's not the patient's fault their care is so expensive. Anyone who comes alongside and wants to help ease that financial burden should be allowed to. This bill is special because it's a bipartisan issue. People from both political sides are coming together to speak up for those who are suffering."
Source: The Media Collective