Lillian DeJean was six years old when she was diagnosed with Mitochondrial Disease. Prior to the official diagnosis, however, she had an underlying, overwhelming feeling that something was wrong. Given the odd symptoms she had growing up; it was evident there was something more going on beneath the surface. Being diagnosed at such a young age was tough for Lillian. “Not only did I not know what was going on but I didn’t want to know and I didn’t want to share it,” Lillian said.
Now 10 years since she was initially diagnosed, Lillian is a teen advocate for people with disabilities. Lillian and her family live in Louisiana, a state that has been in a budget crisis for years now. In Louisiana’s constitution, the only two areas that are financially unprotected are healthcare and education. When Lillian was 13 years old, the state decided to cut medical waivers, which for her and her family, provide Medicaid insurance and hours of help from the support worker. These services allow her family to stay afloat and covers some of the medical bills that their private insurance refuses to.
In 2016, Families Helping Families, an organization dedicated to serving the disability community in all facets of life suggested that Lillian testify in front of the Ways and Means Committee and share her story in hopes of stopping the budget cuts.
Lillian’s advocacy did not stop there. In the summer of 2017, Lillian, along with many other disability advocates from Louisiana traveled to Washington DC to try to stop Medicaid from being cut across the country. Although they were denied meetings with all of the points of contact they planned on meeting with, CNN documented their whole trip, launching their message of advocacy across the nation. Lillian then became the first minor to hold a position on a state council, which brings her to today.
When asked what she thinks other teens can do to become advocates for the Mito community, Lillian stated “I think a lot of people view their senators and representatives as removed from the general population, which really isn’t true. Their contact information is typically out; it has to be. So just giving them a call, sending them an email, or even meeting with them face to face is possible. They’re not as unreachable as we think. Even though you may not be allowed to vote right now, you can still talk about it to adults who can vote.”
Lillian is a force to be reckon with, and hasn’t let her disease darken her positive outlook on life. “The fact of the matter is I have Mito, there’s no treatment, there’s no cure, but I have a really good team of doctors, and I’m here. It’s just life.”
When asked what advice she has for new Mito patients, Lillian said “definitely take the time you need to mourn and be private about it. Let yourself process it. But, you can’t let it over take your life. There’s no reason for that.”
It took a long time for Lillian to open up about her illness, as many other teens with Mito experience as well. It’s normal to want to hide when you don’t feel as normal as everyone around you, but she encourages other teens to open up now. “It’s up to us to normalize it because no one else really knows how to. If we don’t normalize this disease, who will?”
