Westport family who lost daughter to illness now helps others ‘weather the storm’
WESTPORT — Rachel Hope Doran, a beloved Westport college student, died of a rare illness last summer. Now her parents have started a nonprofit to honor Rachel and support other families caring for loved ones with critical illness.
“During our time of absolute turmoil, we had a team of people — friends and family, that stepped up and took over our lives so we could be with Rachel 24/7,” Rachel’s mother Lisa Doran said of the 35 days Rachel was in the intensive care unit.
But Doran said not all families have the same support they did last July after Rachel, who was set to begin her senior year at Cornell University, was diagnosed with Stevens Johnson Syndrome and toxic epidermal necrolysis, a rare reaction to common medications that led to severe burns in 80 percent of her body.
The Dorans’ friends brought Lisa and her husband Alan clean clothes and healthy food while Rachel was treated for two weeks at the Connecticut Burn Center at Bridgeport Hospital.
When Rachel was transferred to New York-Presbyterian and Columbia University Medical Center, a friend called Lisa and said she booked a room for her at a boutique hotel close to the hospital.
“Every morning we got to the hospital, and there were people sleeping in chairs and on the floor. During a time like that you need to be by the side of people you love,” Lisa said.
She added that loved ones also need the resources— accommodation, food, emotional wellness, and financial support — to take care of themselves in a time of crisis.
That’s why, just six months after Rachel passed away on Aug. 17, the Dorans’ launched “Rach’s Hope,” a nonprofit corporation currently in the process of applying for 501(c)(3) status.
The tagline for the organization is “families helping families weather the storm of critical illness,” because Lisa said, “It truly is a storm. You don’t have your bearings.”
Among other supports Rach’s Hope will provide are access to mental health professionals and funds for therapy, because most therapies are not covered by insurance, Lisa said. The nonprofit will also connect families with advocates who can assist them with hospital bills and health insurance communication.
In the months since Rachel died, the Dorans have been flooded with medical bills, many of them addressed to Rachel, which, in addition to hours of calls with insurance companies, can be retraumatizing, Lisa said.
The Dorans believe Rachel received the best possible care while at Bridgeport Hospital and Columbia, but want to help hospitals and caregivers do better to help families.
Sending one bill instead of 10 for a given day in the hospital and removing a deceased person’s name from addresses are just some of the suggestions Alan hopes to communicate to hospitals and health insurance companies. The goal is to make the process a little less painful for future families faced with the critical illness of a loved one.
Rach’s Hope will launch with a kickoff party at Penfield Pavilion in Fairfield on March 2.
“This party is how she wanted her wedding to be,” down to the finger goods and tacos by Bodega Bites, Tito’s Handmade Vodka Bard, live music and views of the beach, Lisa said.
Attire is pajama bottoms and a chic top, because when Rachel was 11 she started a company, “Rachel’s Rags,” through which she made and sold pajamas and donated half the company’s profits to orphaned children in China.
The day before the kickoff event, which would have been Rachel’s 22nd birthday, the Dorans are calling on students to wear their coziest pajama bottoms on campus to symbolize the comfort and hope families with critically ill children need.
Rachel’s love of fashion went beyond pajama bottoms. In the spring, she was to graduate with a degree in fashion design management, and at Cornell curated the exhibition “Go Figure: The Fashion Silhouette & the Female Form.”
“Rachel was always the height of fashion, so that’s what we’re going for for the attire,” Lisa said.
Though, Alan remarked laughing, “Rachel wouldn’t have worn pajama bottoms and a chic top to a party.”
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