By Brooke Hasch October 26, 2011
A former world-class ballerina is facing a life and death situation. Rachel Phillips and her husband Steven have ties to the Tri-States, but for the last few years have spent most of their days in a Vermont hospital.
Rachel suffers from a rare degenerative, and in her case, deadly illness.
From the Royal Ballet in London to the Kirav in St. Petersburg Russia, Rachel Phillips has gone toe to toe with some of the world’s best dancers. About three years ago, a life threatening illness stripped her of her ballerina title.
“We met at a conference. This young ballerina did this incredible leap in front of me during a dance presentation, and I couldn’t believe she was off the floor about 50 inches. She landed and turned and smiled at me,” said Steven Phillips, her husband of 13 years.
Three years ago, Rachel began suffering from a constant headache, unbearable aches and pains throughout her entire body and cough that wouldn’t stop.
“I’ve seen her cough for 3-days straight, night and day. Nobody could explain it, and finally we began seeing specialists to tell us what the problem was,” said Steven Phillips.
Doctors diagnosed Rachel with Ehlers-Danlos syndrome, or EDS. It’s a connective tissue disorder- affecting your skin, joints and blood vessels.
“It causes all of your collagen, or the glue that holds your body together to be very loose and flexible,” said Steven Phillips.
An extraordinary gift for a talented ballerina, but a curse that lead to her downfall in both career and health.
“It’s considered a rare disease at this point, though people that are starting to screen for it regularly are starting to believe perhaps that it’s quite a bit under diagnosed,” said Rachel Phillips.
In Rachel’s case, her EDS has compromised her trachea, more commonly known as the windpipe.
“When she coughs or has any forced exhalation, her trachea collapses over 90 percent,” said Steven.
Now on a ventilator and restricted to her hospital bed most days of the week, on a scale of one to ten, Rachel says her pain stays consistently around an 8.
“I have pain in my legs, hips, knees, ankles, feet, hands, elbows, yea…everywhere,” said Rachel Phillips.
“It’s been a nightmare,” said Steven.
You can turn this nightmare into a dream come true for Rachel. She’s been given the opportunity of a lifetime to undergo a surgery not yet allowed in the U.S. Doctors in Sweden successfully performed the world’s first artificial windpipe transplant a few months ago.
One day last year, Rachel and Steven were spending the day at a Vermont hospital when a doctor passed by their room.
“He said, I just met a man from Europe who’s just done a breakthrough surgery to re-grow a person’s trachea and bronchial branch using their own stem cells.That was about a year and a half ago, and in about a month, that’s the surgery she’s going to have,” said Steven Phillips.
“It becomes pretty simple when it’s ‘you can try this surgery or you can die,'” said Rachel.
An experimental surgery, in Sweden, at a cost of $600,000.
“It’s always a strange concept to have your life put down in dollars and cents,” said Rachel.”This is what my life happens to be worth.”
The surgeon has offered his services free of charge, cutting the bill almost in half, but insurance won’t pay for the rest of procedure leaving them a few hundred thousand dollars in debt. They have no choice.
“According to about a dozen specialists up and down the eastern seaboard, if Rachel does not have the surgery, she has less than a year to live,” said Steven.
Rachel’s story has now gone global. Thousands of supporters have logged onto HelpRachelBreathe.com and donated time and money to get the finances Rachel needs to make the trip across the globe.
“I’m blown away by the people that have never even met me or don’t know me that well, but are trying to help save my life,” said Rachel.
A ballerina at heart, Rachel used to dream of taking center stage. Today…
“I guess I’d enjoy taking walks with my dog and my husband along the lakefront or being able to ride bikes with the two of them again. That would be really fun,” said Rachel.
Rachel will be the 12th person to ever have this surgery, and the first with her condition. She hopes her story will help bring surgeries like hers back to the states for others in her situation.
Help Rachel live by logging onto HelpRachelBreathe.com. There, you can find videos, make donations toward Rachel’s cause and read into the miracle surgery she so desperately needs.