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 that 1,000 to
4,000 American children are born with each year, requires six 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 fighting an illness with no cure.
Rachael’s mother, Karen, turned to Gofundme in August for
help despite Rachael’s aversion to public attention…The Gofundme campaign,
simply titled “Rachael’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.”…
The Millers were once an 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 the Beaumont
subdivision with noise.
Gabrielle, the oldest child, remembers how close the family
was before disease descended. She and Rachael were inseparable. Both girls,
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 was covered in a rash
— even her eyelids. The family’s medical mystery began.
Soon after Karen and doctors helped Rachael fight off the
skin condition using prednisone and other medications, she was diagnosed with
eosinophilic esophagitis, an immune system disease that can severely affect
eating…
The Millers were reeling, and they were 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 doctors at renowned hospitals,
including 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 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?”…
The Millers found clarity for Rachael in Atlanta. Dr. John
Shoffner, a geneticist, was the first to identify Rachael’s rare mitochondrial
mutation. The prognosis was grim, but Rachael found peace in finally knowing
what was wrong with her…
Rachael transferred to the closer Xavier University, near
Cincinnati, after one semester. She left the school in spring 2011 because of
medical reasons. Rachael never returned.
On Christmas Eve 2014, Karen received a new liver at
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.”
The Miller were evicted from their three-story house in
Lexington’s Beaumont subdivision in early August. The family moved to a small
single-floor house in Vine Grove, in Hardin County. 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.
Rachael, 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 of 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 including “Friends” and “Vanderpump Rules.” She also listens to
NPR. Aside from her mom, her constant companion is Phoebe, her Great Pyrenees.
The only time Rachael leaves home is to visit doctors or to have infections
around the port in her chest treated. She has had four infections this year.
The money raised thus far on Gofundme has made a
considerable impact on the Miller family. For Karen and Rachael, though, 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.”
There is a video at the link of Dr. John Shoffner talking
about mitochondrial disease.
Courtesy of Doximity
See .http://childnervoussystem.blogspot.com/2016/07/sarah-wisely.html
See .http://childnervoussystem.blogspot.com/2016/07/sarah-wisely.html
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