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News from News Transcript June 13, 2007
Infant's memory lives on as foundation
aids others
BY TALI ISRAELI
Staff Writer
Emma Patmore may have only lived for 10 months, but her legacy
continues. The foundation, begun as her namesake, is raising funds
for children like Emma - those who have died without explanation or
diagnosis.
The Emma Patmore Foundation was organized by Gregory and Tara
Patmore, of Pennsylvania, to help their daughter Emma, who was
suffering from an undiagnosed disease. Emma, 10 months old, died in
December 2006. Her parents are continuing the foundation to provide
aid to other families with children who are suffering from
undiagnosed diseases and children who are ventilator dependent.
Tara's sister, Catherine Patmore, of Jackson, said her niece
suffered from seizures, was unable to breathe on her own and did not
develop past the newborn stage; she spent most of her short life in
the hospital on a ventilator and breathing tube.
"They ran every test they could think of," Catherine said.
According to the foundation's Internet Web site, Emma's doctors
believed it was a rare genetic disease, possibly metabolic or
mitochondrial in nature. Her brain was underdeveloped and continued
to shrink, she had poor muscle tone and lost her eyesight, according
to the Web site.
Emma's brain could not control any involuntary functions of her
body, resulting in a very high heart rate, hypertension, unexplained
sweating and temperature instability, according to the Web site. The
disease eventually affected her heart and she went into heart
failure.
The foundation was started to help the family pay for Emma's medical
bills, Catherine said. A fundraiser was held in November 2006 which
raised more than $12,000 for the Patmore family.
"Emma's illness took a big toll on her parents financially. Her
illness left nearly $600,000 in medical bills, a portion of which
they were responsible for," Catherine said. "The search for answers
can be not only emotionally draining, but financially draining also.
Many families travel to specialists all over the country searching
for someone who can tell them what is wrong with their child.
Parents can be out of work for long periods of time or may have to
quit jobs altogether and care for their medically fragile children."
Catherine said that during Emma's illness, Gregory and Tara were
surrounded by such loving and supportive family members and friends
that they wanted to turn this nightmare into something good and help
other families.
"Her parents knew she would have a short life and felt they needed
to make Emma's mark on the world for her. They have since realized
she did leave her own tremendous mark on this world in her short
time here," Catherine said. "Although so little and helpless, she
taught us so many valuable lessons and inspired us in ways that
changed our lives forever. Her family only hopes to honor her memory
in a way that is most deserving."
The second annual bowling fundraiser will be held on June 24 from
2-5 p.m. at Howell Lanes, Route 9 south, Howell. The cost is $20 per
individual bowler or $100 per team of six bowlers. The cost includes
three games of bowling, shoes, pizza and soda. A raffle and prizes
will also be included.
Catherine said her goal for this year is to raise $14,000. The money
will support research in the fields of metabolic and genetic
medicine and will also support various charitable organizations. The
Emma Patmore Foundation will also support Dr. Mike Dettore at Penn
State Children's Hospital and his Technology Dependent Care Program.
According to Catherine, Dettore runs a summer camp for children who
are on home ventilators, which is one of four in the country.
"He is doing wonderful work for vent-dependent children and their
families. If it hadn't been for Dr. Dettore's program, Emma's
parents would not have been able to enjoy their time with her as
much as they did," Catherine added.
For more information about the fundraiser, to sponsor a bowling lane
or to make a donation, contact Catherine and Eric Patmore at (732)
961-6902 or send an e-mail to
jerzeykat@optonline.net
. For more information about the foundation visit
www.luvemma.com
.
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