Reneé Ruth isn’t your average college student. The 19-year-old Dana, Indiana resident is paying her way through school at Ivy Tech Community College, attending classes even though she is on a ventilator, while she battles three chronic conditions: Ehler’s-Danlos syndrome, dysautonomia and mitochondrial disease.
Though she lives in Indiana, Reneé is a patient at ProMedica Toledo Children’s Hospital, a place she almost considers a second home because she comes to Toledo for follow up care every few months.
“Many people die from mitochondrial disease because there is not much information out there about it. There are only a select few — about ten doctors in the country — that specialize in mitochondrial disease.” Reneé says. “I have been blessed by two doctors, Dr. Banerjee and Dr. Maiteh. Toledo Children’s Hospital saved my life.”
When she isn’t studying for an exam, traveling to Toledo for care, or spending quality time with her boyfriend, Reneé and her mother Liz, work as a team to advocate on behalf of patients across the country with rare conditions. This summer, the family plans to travel to Washington, D.C., for the Speak Now Kids Family Advocacy Day and Mitochondrial Disease Symposium in June.
Rare and Misunderstood Diagnoses
Reneé is no stranger to pain. She was diagnosed with Ehlers-Danlos syndrome — a group of disorders that affect connective tissues, which support the skin, bones, blood vessels, and other organs — at age 10. Four years later, she was diagnosed with dysautonomia and mitochondrial disease.
Dysautonomia is an umbrella term used to describe different medical conditions that cause malfunctions in the nervous system.
“These are things we don’t consciously think about like our breathing heart rate, blood pressure, digestion, kidney function, body temperature, and dilation and constriction of the pupils,” explains Liz.
And mitochondrial disease results from failures of the mitochondria, which are present in every cell our body makes, except for red blood cells. Mitochondria are responsible for creating more than 90% of the energy the body needs to sustain life and support growth.
“Mitochondrial disease and Ehlers-Danlos syndrome are both very painful, and there are no cures or specific treatment,” adds Reneé.
In addition to severe pain, Reneé often experiences fatigue and memory loss.
She struggled with finding local doctors in Indianapolis who took her seriously.
“It was difficult finding an understanding doctor that listened and wasn’t quick to put me in a box or say I was ‘an emotional teenage girl’ or that ‘something must have happened at school,’” Reneé recalls.
And though she is thankful for the care she receives now at Toledo Children’s Hospital, she still feels frustrated.
“No one should have to travel seven hours for care,” Reneé says. “More hospitals should be able to treat my conditions.”
Reneé lives life to the fullest and values quality over quantity. Even when it’s hard to stay positive, she often sees the light at the end of the tunnel. Had it not been for the care Reneé receives at Toledo Children’s Hospital, she might not have achieved a life goal.
Reneé has always loved photography as a form of self-expression, and the Child Life staff at Toledo Children’s knew all about Reneé’s passion. In between hospital visits, Kate Schwann, Child Life coordinator, contacted Reneé about an opportunity to be on the other side of the camera, and be photographed by world-renowned artist Rick Guidotti of Positive Exposure.
The photographer was interested in capturing the spirit and beauty of patients at Toledo Children’s Hospital for a now permanent exhibit in the hospital’s lobby. It was an experience Reneé will never forget.
“Being photographed by a professional photographer was on my bucket list,” Reneé says. “I loved working with Rick because he wasn’t afraid of my equipment and has an amazing love for kids. He even took time to look at the pictures I have taken as a photographer.”
Reneé’s photo currently hangs alongside 50 other pictures taken by Guidotti in a permanent exhibit called Beyond the Frame, which supports the Patient and Family-Centered Care philosophy at Toledo Children’s Hospital.
Her image, appropriately titled “Windows to the Soul,” was also submitted into a national photo contest hosted by the Children’s Hospital Association.
“Windows to the Soul” is one of 50 (out of 250 submissions) photos selected in the national Children’s Hospitals Photo Exhibit, which will be on display to the general public June 15-16 in the foyer of the Rayburn House Building for Speak Now Kids Family Advocacy Day, and the week of June 22 in the rotunda of the Russell Senate Building in Wash., D.C. In addition, the exhibit will travel across the country for two years, displaying at children’s hospitals and partnering organizations in support of a wide variety of outreach efforts and events.
“I am blown away by the news that a photograph of myself was chosen for the national exhibit,” says Reneé. “A lot of younger children are represented, but I’m honored to represent those children’s hospital patients who are transitioning to adulthood. I am extraordinarily honored to be able to represent all those suffering with these diseases, and accomplish my biggest goal: To help bring awareness to these illnesses.”
Becoming a Self-Advocate
It turns out Reneé’s parents were already planning a family trip to Washington, D.C., for June, before they heard the good news about the exhibit.
Vacations can be very difficult for the family because of Reneé’s various medical needs and equipment. But the chance to attend the Mitochondrial Disease Symposium was too good to pass up.
“There really needs to be more funding and awareness for these conditions,” Reneé says. “My goal is for dysautonomia and mitochondrial disease to be as well know as cancer. Just like breast cancer is associated with the pink ribbon, my hope is for mitochondrial disease to have a green ribbon, dysautonomia to have the blue ribbon, and for Ehler’s-Danlos syndrome to be represented with the zebra print ribbon to be as easily recognized and known for the illnesses they represent. I also would love for there to be a treatment plan for mitochondrial disease some day.”