ORLANDO | Rae L’Heureux is full of life. A California transplant from San Francisco, L’Heureux came to Orlando by way of a state grant that allowed her to help children.
“I designed a theatre program for at-risk youth,” L’Heureux says. “The state of Florida gave me a grant to bring that program here so I became a Florida girl. After the grant money dried up, I thought, ‘Where can I put my theatre degree to work?’ That’s how I got to Disney.”
L’Heureux has been with Disney for 21 years now. Not long after starting at the House of Mouse in 1997, L’Heureux was taken to the hospital with back and side pain. The doctors diagnosed her with polycystic kidney disease, or PKD.
“My doctor told me a lot of people have PKD, it’s the most common kidney disease, and that most of the time nothing happens with it,” L’Heureux says. “But my doctor said we’ll keep an eye on it and that was that.”
By 2014, L’Heureux was working with only 15 percent of her kidneys and was ready to be placed on a transplant list through Florida Hospital.
“That’s when they found out I had breast cancer,” L’Heureux says. “Luckily, they caught it at stage zero, and after a couple of surgeries I was cancer-free.”
L’Heureux underwent a mastectomy and the removal of some lymph nodes. The surgeries took their toll on her kidneys, leaving L’Heureux with only 8 percent kidney function. Worse even still was L’Heureux was no longer allowed to be on the transplant list.
“Florida Hospital has a rule that if you were diagnosed with breast cancer, that is stamped on your records and you cannot apply again for a kidney transplant for another five years. You have to be cancer-free for five years,” L’Heureux says.
The concern is that once you are put on the immunosuppressant drugs required for organ transplants, any cancer living in the body can be escalated. The five-year period is to ensure the cancer will not return.
“I understood their concern. I totally got it,” L’Heureux says. “But that didn’t make it easier. I was thinking that now I have to sit around on dialysis for five years until I can reapply.”
While speaking with her insurance company, L’Heureux was told that applying to, and being evaluated by, another hospital was an option. In May 2016, L’Heureux visited the Mayo Clinic in Jacksonville.
“I was up there for a week,” L’Heureux says. “They do stress tests, massive blood work, everything you could imagine. Five full days worth of testing. The final day I met with the lead doctor and she said everything looked great but they were concerned that I had had breast cancer.”
L’Heureux met with the Mayo Clinic’s oncologist who cleared her to be placed on the donor’s list.
“I just started crying,” L’Heureux says. “And then I asked the doctor if I could give him a hug.”
Getting on the list was just step one. There are over 100,000 people currently on the wait list for organs, according to the United Network for Organ Sharing. Most of the people of the wait list are waiting for a kidney.
L’Heureux is without family nearby and was filled with questions. Enter Olga McGarry.
“I met Olga working the Star Wars weekend at Hollywood Studios,” L’Heureux says. “Olga had a kidney transplant a few years ago, which I had heard about from people at Disney. She started filling me in on what I needed to know. We are now kidney sisters.”
L’Heureux and McGarry, joined by a third “kidney sister,” began a mission to not only raise awareness of what life is like living with a kidney disease, but to get the word out that they were looking for a donor.
“Olga’s first kidney rejected after almost five years,” L’Heureux says. “We both have GoFundMe pages and are trying to get the word out. That’s when I thought it might be better if we pull our resources together to get the word out.”
That’s when L’Heureux created a Facebook page called “Disney Girls Just Wanna Have Kidneys.” L’Heureux reached out to the other two Disney kidney sisters to get their permission and launched the page.
“I was like, between the three of us, if we combine and make one public Facebook page with all of the friends we have we can get the word out faster,” she says. “The name is a catchy way to get people’s attention.”
L’Heureux is hoping the attention will help to get her a living donor, someone to voluntarily give her one of their kidneys, as the life span of the organ increases.
“Most everyone is born with two kidneys but you only need one,” L’Heureux says. “So most every person has the ability to give life to someone in need.”
Even as L’Heureux is working on finding a donor, her own health wasn’t even her main concern.
“Olga needs a kidney immediately, no joke,” L’Heureux says. “She is O-negative, which is the hardest blood type to get a donor for.”
To see if you can help or for more information visit Facebook.com/DisneyGirlsNeedKidneys.
