When John and Laurian Scott began the Olive Branch Fund, they hoped
to find a researcher who could help provide treatment options for their
2-year-old son Noah.
Like his older sister Thisbe, Noah had been diagnosed with
Brown-Vialetto-Van Leare syndrome, a rare motor-neuron disease in which
the cells that control voluntary muscle activity such as speaking,
walking, breathing, and swallowing are destroyed.
“When you’re dealing with a terminal illness, you latch onto hope,”
Laurian says. “With Thisbe, there had been so few documented cases. No
one knew what the disease was. Other people had it and plateaued, but
there hadn’t been enough cases to know what would happen.”
At 16 months old, Thisbe’s symptoms began with wheezing in November
2005. Five weeks later, her vocal cords were frozen into a near-closed
position, and she had a tracheostomy to allow her to breathe through a
tube in her neck.
She began to use sign language to communicate, but as the disease
worsened, she lost her ability to walk, hold up her head, and move her
fingers. A year after her symptoms began, Thisbe’s breathing tube
became plugged with mucus and she suffocated. She was resuscitated by
emergency medical procedures and survived another five months before
succumbing to the disease.
A month later, the Scotts’ 10-month-old son Noah began exhibiting
symptoms of the same disease.
“That’s what precipitated everything,” Laurian says. “We hoped he
might have a different outcome.”
Approximately 7 million people carry a gene that causes a
motor-neuron disease. Other motor-neuron diseases — such as Lou
Gehrig’s and progressive muscular atrophy — are more well known
but just as difficult to treat.
“We have known about them since the late 1800s, but there is not one
single treatment. There’s not a shred of a treatment. That is
unacceptable,” Laurian says. “When you are diagnosed, it is a death
sentence.”
After spending three years trying to find treatment options, a
specialist told the couple that researchers wouldn’t know where to
start with a treatment without finding the gene that causes the
disease.
Thus began the Olive Branch Fund.
“It was actually our friends and family who came up with the idea,”
Laurian says. “They’ve taken the whole thing on their shoulders. John
and I follow the momentum and show up at events.”
The name of the fund calls to mind the couple’s children. Thisbe
means “where the doves live.” In the biblical story of Noah, a dove is
sent out from the ark. When it returns with an olive branch in its
beak, Noah knows the waters have receded.
The Scotts’ goal is to fund a research position at Columbia
University’s Motor Neuron Center. The family has been told they need a
minimum of $100,000 a year, and they need enough money for a three-year
commitment.
The Olive Branch Fund already held a fund-raiser in Laurian’s
hometown of Jackson, Mississippi, where it raised $110,000. Though the
Scotts now live near Nashville, John went to Memphis University School,
and his family still lives in Memphis.
As part of a multi-city fund-raiser, the Olive Branch Fund will host
“A Mighty Voice” Saturday, May 2nd, in Overton Park. Registration for a
walk begins at 2 p.m. The Memphis Aardvarks, Dynamic Diamonds and the
Dempseys are scheduled to perform.
There are currently 58 documented cases of BVVL, but Laurian points
out that many cases are not documented. Thisbe’s case, for instance,
hasn’t been documented, though the family is hiring someone to do
so.
Thisbe was diagnosed after her pediatrician Googled her symptoms.
Her neurologist had never heard of the disease.
“With cancer, at least you have something to hope for: We’re going
to start chemo, radiation, this is how we’re going about it,” Laurian
says. “If you have a motor-neuron disease, the doctor just shakes his
head and says, ‘I’m sorry.'”
Laurian, who has an older daughter from a previous marriage,
maintains the organization’s websites and has written a children’s book
to raise awareness of the disease. But for her, the Olive Branch Fund
is much more than that.
“This is a way I can continue being their mother,” she says.
