Emily and her twin sister, Anna, relax for a few minutes with
their mom, Amy Bruce-Stevens; stepdad, Craig Stevens; and dad,
Rob Zimmerman.
Amy Bruce-Stevens of Trenton hopes and prays there will be a cure for her
daughter Emily’s “orphan disease,” and that a recent benefit concert will
help make that come soon.
Emily 4, twin sister to Anna, is in remission from Langerhans cell
histiocytosis, an illness that affects one in 200,000 children born each
year in the United States.
The illness is so rare that’s it’s known as an “orphan disease” because the
numbers of patients are too small to generate government-supported research.
LCH is one of several types of histiocytic disorders that cause a certain
type of white blood cells called histiocytes to clump together and attack
healthy tissue and organs.
In Emily’s case, the unwelcome diagnosis started with purple spots that
developed on her scalp, chest and bottom when she was 4 months old.
Initially, the marks were thought to be baby acne and diaper rash. But Amy
pressed for a cause when treatments brought about no improvements.
A dermatologist’s request for a lab biopsy identified a cause, but it was a
condition the doctors had never seen before. Emily’s pediatrician had to
look up the name.
Emily’s physician called Children’s Hospital and set up an appointment with
the oncology deparment for the little patient.
“That was when I got scared,” Amy said.
LCH affected Emily’s skin at first and later caused her liver and spleen to
become enlarged. Histiocytic disorders also can cause lesions on the bones
and affect the lungs, eyes, ears and central nervous system.
The disease can be fatal, result in chronic problems or clear up
spontaneously.
In Emily’s case, six months of chemotherapy and steroid treatments resulted
in the happy news that her ailment was “in remission.”
Now the chatty, fair-haired preschooler has had her hospital follow-ups
reduced from once a month to once a year, and she looks forward to her CAT
scans, much-anticipated visits she calls “getting her picture taken in the
doughnut.”
For Amy, though, “remission” isn’t good enough.
“I guess in the big scheme of things, it’s not that many children, but it
seems like a ton to me, knowing what you’ve gone through and you know what
all these parents are going through,” she said.
Despite the family’s good news, the chance of Emily having a relapse some
day spurs her on.
“It’s knowing that there is no cure for this and that there is a possibility
of them finding a cure through research and that the only way the research
is going to be funded is through donations,” Amy said.
Amy had sent fund-raising letters to friends and family on behalf of the
Histiocytosis Association of America in the past, but she wanted to do more,
and so did her husband, Craig Stevens, Emily’s stepfather.
Owner, manager and promoter of musical talent for Madcap-PDC Entertainment
in addition to his daytime job as an engineering manager, Craig called some
friends to arrange a benefit concert.
Soon, Emily and three local and national musicians, including Brian Vander
Ark of hit group The Verve Pipe, Arizona-based singer-songwriter Jordon
Taylor and area rockers Severance were sharing the stage at the Trenton
Village Theatre.
With the support of proud family members (including Emily’s father Rob
Zimmerman of Trenton), colleagues and fans of the performers, the event
raised funds for the Histiocytosis Association of America and, to honor
Craig’s mother who lost her life to cancer, the American Cancer Society.
While the evening’s 4-year-old announcer may have had trouble reaching the
microphone, her performance in a previous ballet recital prepared her for
the spotlight.
“Hi, everybody. My name is Emily and I have histiocytosis. Thank you for
listening to Jordon,” Emily said.
The next introduction varied from the last only in the performer’s name.
When headliner Vander Ark suggested she include the word “genius” in his
intro, Emily told him, “No, no, I already have my words,” and gave the same
speech a third time.
The Histiocytosis Association sent the family educational literature about
its work, as well as the balloons and suckers that Anna and Emily shared
with guests.
Musicians either donated their performance fees or a percentage of CD sales,
and The Hotel Grill of Trenton offered a portion of profits from an
after-party with the performers.
Craig was pleased with the result.
“It was great; everybody had a really good time,” he said.
In fact, he wants to do more charitable events, perhaps even a battle of the
bands.
In the meantime, the 4-year-old twins keep their mom running with swimming,
ballet and soccer, and Emily hopes to add gymnastics to the schedule.
Amy also keeps abreast of other families whose children share her daughter’s
diagnosis through a histiocytosis group on the Yahoo Web site, sharing
information with members on anything from doctors they’ve visited to how to
coax a child to take his medication.
And at least some of the time now, Amy said, she can stop thinking about
what the family has been through.
“At this point, she’s so normal and she’s so healthy that I just don’t even
think about it until she gets sick or we have to go to the doctor or
something like that comes up.” Amy said.
A brochure from the association reports that donations have made it possible
to fund 110 research projects to date.
“I want families to know and understand what this disease is and how it
affects children and know that there is a way they can help if they have the
opportunity to do so,” she said.
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