Ellis Rose Quesada is a 9-year-old girl who can captivate a room full of strangers.
But her spontaneous performances and spunky dance moves aren’t the only features that make this little girl unique. Ellis is living with Cystic Fibrosis (CF), an inherited life-threatening condition with an average life expectancy of 37 years old.
Today, Ellis and her mother are taking proactive measures to change the narrative of the disease and actively participate in research to accelerate a cure.
When Ellis was born, her mother Kristina had no idea her daughter would be sick. It wasn’t until her doctor discovered that Ellis was among the few to be born with CF that she realized life wouldn’t be ordinary.
In addition to living with excruciating daily symptoms including nasal congestion, sinus problems, wheezing, and breathing issues, Ellis was required to take enzyme pills after every time she ate food, including small snacks. Despite the uncertainty of the future, Ellis and her family remained optimistic.
She knows how to use that confidence and that power in who she is to elevate others around her. I think a lot of that comes from being very upfront early on about her illness and what it is that she’s dealing with.”
When Ellis was three years old, she was accepted into a CF clinical trial. “It takes so long to get these drugs to market. It feels like you’re moving in slow motion,” says Kristina. But over time, they began to see the benefits of participating in the study.
As Ellis continued to take the drug, she began showing signs of progress. She slowly started to gain healthy weight and her energy levels went up. Tests revealed that her pancreatic sufficiency went from insufficient to sufficient.
Today, Ellis no longer has to take enzymes with her food and is excited be able to enjoy the fun foods children love, like ice cream and candy bars. It’s progress like this that’s ignited a passion and drive in Ellis to help further find more treatments for herself and others living with CF.
Kristina is hopeful that critical new drugs will come to market sooner and believes LunaDNA has the power to accelerate discovery when patients and the research community work more closely together.
“Most of us think that we can walk into a drug store and get exactly what we need.” says Sharon Terry, health advocate and President and CEO of Genetic Alliance.
“It’s really hard to bring a treatment to market. LunaDNA is doing a very simple thing: it’s offering me a place to put my data and, at the same time, allows scientists to aggregate the data they need for discovery. So I retain the control of it and I’m freely participating in research but not worrying about being identified or that I’ll lose my privacy. Bringing all these data together in one place, we start to be able to make discoveries very fast.”
Kristina knew that early intervention would accelerate a treatment for Ellis and open up new possibilities for science to find a cure. “Her case is the first of its kind where they are seeing symptoms being reversed. There’s still new drugs coming to market today that we’re going to want her to have access to. If there’s going to be a better way with something like LunaDNA then I think that’s going to be huge for all patients to accelerate getting the drugs that they need in their hands.”