Infant's memory lives on as foundation aids others
BY TALI ISRAELI
Correspondent

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. "Al-though 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 e-mail to jerzeykat@optonline.net. For more information about the foundation visit www.luvemma.com.