When timing becomes everything

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Rachel and Steven Phillips moved in with friends in Milton, Vermont, in 2008. They were eager to start a School for the Arts and share their love of dance and drawing with the local community.

Rachel is an accomplished ballerina, her career spanning work with the Royal Ballet in London and major companies in America. The couple has been together for 17 years, meeting in Nashville where Steven, a licensed minister, was speaking at a conference and she was performing with the Nashville Ballet.

Then, two days before Christmas, Rachel stumbled in the kitchen. Intense shoulder pain prompted her to try physical therapy, but seven months of effort produced no improvement. Next, she got a headache that lasted longer than normal, and a respiratory infection with three-day coughing fits. “That kind-of started my body falling apart,” she says.

The symptoms progressed rapidly, and she was diagnosed with Ehlers-Danlos syndrome, a rare genetic disease, which affects the connective tissue of the body.

While dealing with the transitions and challenges of her ongoing illness, Rachel and Steven found they also had to find new housing.

“Forty-seven surgeries took absolutely every dime we had,” explains Steven. Rachel remembers thinking, “We’re gonna be out on the street at the end of the month – with oxygen tanks! I’m not even sure how you do that. We were fairly stressed out.”

Rachel’s doctors urged them to move into Burlington so that she was closer to the hospital. At times, her lungs collapse and she has less than two minutes to get to the emergency room.

Luckily, they were able to find an accessible apartment, but sometimes the elevator would break down and take weeks to fix, or they would look in a neighbor’s window and see drug use.

Three years ago, they were finally able to move into a CHT apartment in downtown Burlington. Rachel loves the covered parking and the elevator. She particularly appreciates how quickly elevator repairs are made – even on Memorial Day weekend.

“Champlain Housing Trust was a part of life or death for us,” Steven says. He can make it to the ER now in one and a half minutes: “I know, because I’ve done it!”

“Living here made it possible. We’re finding a way to adapt that helped make the disabilities that we both fight be much less of a hindrance to our lives,” says Steven.