The illness ravaged her 25-year-old body and left her family broke and in need of help.
Rachael Miller’s condition, a genetic disorder which 1,000 to 4,000 American children are born with each year, requires six different medications administered through IV, a steady flow of nutrients delivered through ports in her chest and about $35 worth of disinfectant supplies and gauze every day. The Millers declared bankruptcy this summer, having spent nearly 10 years and about $100,000 out of pocket fighting an illness with no cure.
Rachael’s mother Karen turned to gofundme in August for help despite Rachael’s aversion to public attention. Since gofundme went live in May 2010, the San Diego-based crowdfunding platform has become a life preserver for thousands of Kentucky families drowning under waves of medical bills.
The gofundme campaign, simply titled “Rachel’s Medical Needs,” has raised $6,100 of the $60,000 requested.
The money is for an automatic hospital bed that Rachael can use on her own, a car to accommodate a wheelchair and medical supplies.
“Rachael’s doctors have told us that her disease has progressed into its final stages,” Karen wrote on gofundme on Aug. 13. “How long that means she has we don’t know. It terrifies me and grieves me beyond words. Rachael has always been a fighter.”
$20.7 million Amount raised from 30,000 gofundme appeals in Kentucky since the website started in 2010
Medical-related needs top gofundme’s most donated-to categories, with educational campaigns and volunteerism following behind.
Donors’ responses to health care fund-raising appeals doesn’t surprise Cameron Hamilton, director of financial planning for the Lexington-based firm Ballast.
“Medical needs tend to be immediate,” Hamilton said. “If you need surgery today, that bill will be on its way. I think people notice the exigency and are more likely to help out as opposed to a campaign that might be raising money for a project or business, and the ease of the crowdfunding transaction pairs well with this urgency.”
In comparison to other crowdfunding platforms like Indiegogo, gofundme does not require the campaign goal to be met in order for the recipient to retrieve the money. Gofundme projects do not have incentive-based requirements like those on Kickstarter and have no required deadlines.
There have been 30,000 gofundme campaigns in Kentucky, raising a combined $20.7 million, according to statistics provided exclusively by gofundme’s regional communications manager Bartlett Jackson. That amount represents 355,000 total donations that average $59 each. Lexington has accounted for 5,700 total gofundme campaigns, raising $2.7 million. Louisville has 8,000 campaigns that raised a total of $4 million.
Among the thousands of Lexington-based gofundme campaigns are dozens of people fighting incurable diseases. What some fund-raising appeals do not reflect is the full impact of illness; the intimate back story on how a family got to a bleak place. In that regard, the Millers were unique.
The Millers were once the idyllic Lexington family; a father in pharmaceutical sales, a mother who worked at a blood bank and three ebullient children who filled their three-story home in Beaumont with noise.
Gabrielle, the oldest child, remembers how close the family was before disease descended. She and Rachael were inseparable. Both girls, who are only a year apart in age, would make home movies with their brother Seth, now 22. One video was about magic underpants.
If the three Miller children weren’t home playing with their friends, they could be found at the Beaumont YMCA.
“My house was a place for the kids to have what they couldn’t; pizza, candy,” said Gabrielle, 26.
In 2007, Karen started feeling lethargic and was diagnosed with autoimmune hepatitis, a chronic illness in which the body attacks the liver. About the same time, Rachael’s childhood eczema, a common skin condition, started worsening. Eventually her entire body, including her eyelids, was covered in a rash. The family’s medical mystery began.
Soon after Karen and doctors helped Rachael fight off the skin condition using medications like Prednisone, she was diagnosed with eosinophilic esophagitis, an immune system disease that can severely impact eating.
It is not uncommon for autoimmune diseases to be inherited, according to information on John Hopkins University’s pathology website.
“This tendency may be large or small depending on the disease but, in general, close relatives are more likely to develop the same or a related autoimmune disease,” states John Hopkins.
The Millers were reeling and desperate to find out what was going on with Rachael’s health. The family spent the next several years searching for answers from more than 30 different doctors at renown hospitals like the Mayo and Cleveland clinics. Meanwhile, Karen suffered from end-stage liver disease and was in need of a transplant. Karen’s husband, Terry, was also diagnosed with bipolar disorder.
“It wasn’t scary,” Rachael said, remembering the early stages of her illness. “I thought, ‘It’ll go away.’ When it didn’t go away, I just wanted to find an answer. It’s not like I was looking for a certain disease, I just wanted to know that I wasn’t crazy. Am I creating this in my own head?”
Gabrielle remembers flying home from college — she went to Marymount Manhattan College in New York — and not recognizing her mother whose skin had a developed a yellow hue because of jaundice.
The Millers found clarity for Rachel in Atlanta. Dr. John Shoffner, a geneticist, was the first to identify Rachel’s rare mitochondrial mutation. While the prognosis was grim, Rachel found peace in finally knowing what was wrong with her.
“People put a lot of assumptions on me without knowing me; there’s so many forms of mitochondrial disease,” Rachael said. “Every person is different.”
Rachael forged ahead, finishing high school; history was her favorite subject.
Rachael enrolled at the University of Charleston. Because of Rachael’s eosinophilic esophagitis, Karen cooked her special meals and hand delivered them once a week. The college was 177 miles away. The food had no nuts, wheat or dairy.
“It’s like having food poisoning 24/7,” Karen said. “She would still vomit it up. She couldn’t keep that food down.”
Rachael transferred to the closer Xavier University, which is near Cincinnati, after one semester. She left the school in the spring of 2011 because of medical reasons. Rachael never returned.
On Christmas Eve 2014, Karen got a new liver at the University of Kentucky Chandler Hospital.
“My mom has always been extremely strong,” Gabrielle said. “She’s been the rock of the family. … That was the best gift ever.”
$2.7 million Amount raised from Lexington gofundme campaigns
Rachael and her parents were evicted from their three-story home in Lexington’s Beaumont community in early August. The family moved to a small single-floor house in Vine Grove. The home is much quieter now, with the gentle whir from Rachael’s two IV pumps breaking the silence every so often. One is a pain pump with narcotics (which is refilled once a week by a visiting nurse) and the other provides nutrition the only way Rachael can get food without getting sick.
Rachel, the once svelte high school swimmer—her favorite stroke was the butterfly—has lost more than 60 pounds.
Karen’s tireless support of Rachael over the past decade has forced her to miss the college graduations for her other children. Her life is dedicated to helping Rachael fight her disease.
Rachael spends most of her time sleeping or on an iPad watching shows like “Friends” and “Vanderpump Rules.” She also listens to NPR. Aside from Karen, Rachael’s Great Pyrenees Phoebe is her constant companion. The only time Rachael leaves home is to visit doctors or to have infections around the port in her chest treated. She’s had four infections this year.
The money raised thus far on gofundme has made a considerable impact on the Miller family. But for Karen and Rachael, the words of support and stories from complete strangers have been priceless.
“No one can say, ‘she’s going to die next week or tomorrow,’” Karen said. “She can last a lot longer.”