Gaucher Community News - National Gaucher Foundation

Emma Grunstein
A Tribute to Emma Grunstein’s Family
Submitted by Cyndi Frank
Many people with Gaucher look at their disease
as a mixed blessing. It can often be very difficult
living with or being the parent of a child living
with a chronic, debilitating and sometimes lifethreatening
disease. But at the same time, and
sometimes through their suffering and soul
searching, many with this disease have been
fortunate to meet and connect with others who
are going through the same experiences in
life, and many have developed close personal
friendships through the Gaucher community. And
that is exactly how the NGF feels about Emma
Grunstein’s family.
It pretty much started with Facebook. Rick
Grunstein, who lives in New Jersey and is the
father of a little girl Emma with Gaucher disease,
saw a posting in the profile of an old friend
from childhood camp about a Gaucher Walk
in Baltimore. His wife Randi contacted Jenny
Rendelman Schloss who was hosting the Walk
for her daughter Madelyn, and the two hit it off
immediately. Randi jumped on board and helped
raise money in honor of her daughter Emma in the
New York/New Jersey area in support of the Walk
in Baltimore.
Emma was diagnosed with Gaucher disease when
she was four years old. On a visit to the doctor
for pink eye, Emma’s pediatrician that her stomach
was a bit distended. When they went back to the
pediatrician the following week everything seemed
fine, but a few weeks later, during Emma’s four-year
visit, the pediatrician saw the notation and checked
and did feel that her spleen was large, so he sent
Emma for an ultrasound. It showed that Emma’s
spleen and liver were both enlarged, typical
Gaucher symptoms. They first thought it might
be mononucleosis, and performed a round of
blood tests, then another, and everything came
back normal. They were then sent to a pediatric
hematologist who suggested it might be Gaucher
disease, but Rick and Randi thought that was
impossible since Rick had been screened for
genetic diseases and he tested negative. What
we know now is that it was a false negative. On
another blood test from little Emma, she tested
positive for Gaucher disease.
Not soon after the Gaucher Walk in Baltimore, the
Grunstein family’s wonderful Aunt Silvia (Sue)
Liberman passed away and left a generous bequest
to the National Gaucher Foundation in Emma’s
honor. Through this we were able to meet Muriel
(Micki) Grunstein and her husband Michael,
Rick’s parents, members of Emma’s wonderful
family who have also generously supported
Gaucher disease and the NGF.
Emma’s family continues to be involved with
the National Gaucher Foundation through
giving generously and becoming involved
with NGF events. During last year’s auction,
Randi graciously offered to help on the auction
committee. Randi is a go getter and helped to get
many wonderful items donated to the auction
and encouraged her friends and family to bid on
the auction site when it was live during the month
of September. Randi’s parents, Harvey and Rita
Sharinn, donated popular Giants football tickets,
which received the most bids in the entire auction
and raised more over its retail value than any other
auction item.
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