Attitude, family motivate daughter

Against all odds, Jennifer recently celebrated her 30th birthday.
By SARAH POULTON
VINDICATOR STAFF WRITER
CANFIELD -- At birth, Jennifer Weingart was given 72 hours to live.
She weighed only 3 pounds, and her umbilical cord was short and decayed. She had a hole in her heart. Her parents, Michael and Marilyn Weingart, knew something wasn't right.
"I knew there was something wrong," Michael Weingart said. "She was delivered on her due date, but Marilyn looked like she was only three months pregnant."
Jennifer has struggled her entire life, Marilyn Weingart said. She has been read her last rites three times, but that hasn't stopped her. She's a fighter.
When she was born, Jennifer was diagnosed with Leigh's disease, a rare inherited neurometabolic disorder that affects the brain, spinal cord and the lungs, according to the National Organization for Rare Diseases Inc.
Medical care
Jennifer was under the care of Dr. Michael Nigro of Detroit for most of her childhood. When she moved to Canfield, she was placed under the care of Dr. Thomas Burkert, a specialist in internal medicine.
Dr. Burkert said Leigh's disease is a tough diagnosis to make. He described it as being a disease of the mitochondria, which are the powerhouse of human cells. Jennifer has a specific enzyme deficiency that affects her muscles, particularly in her lungs.
"In the severest forms, you die in infancy," Dr. Burkert said. "Certainly, I'm by no means an expert, and it is uncommon, but it's unique that she's made it this far. Frankly, I think her parents deserve a huge amount of credit."
On May 31, against all odds, Jennifer celebrated her 30th birthday, surrounded by 150 friends and family members. Her parents threw her a surprise birthday party May 27 at Nancy's Place in Youngstown.
Jennifer was lavished with gifts and cards from friends and family. Her boyfriend, Petey, gave her candles, roses, a bracelet and a purse. Petey never left Jennifer's side during the party, Marilyn said. Jennifer met Petey at the Meshel MASCO workshop, a day-program for clients of the Mahoning County Board of Mental Retardation and Developmental Disabilities.
Jennifer and Petey have been dating for nearly two years, he said. They spend a lot of time together at MASCO and at Jennifer's house. They do normal couple things, like going to movies and talking on the phone.
"I call her every night on the phone. I like her for a girlfriend," Petey said.
Jennifer and Petey are as close as they can be with her father hovering over them.
"Her fondest wish is to be with Petey," Michael said. "I told her she could only kiss Petey on holidays. She started celebrating Martin Luther King Day."
"It's love," Jennifer said.
'She's just amazing'
Jennifer's family members say Petey is a lucky guy to have such a close relationship with Jennifer.
"She's just amazing," Marilyn said. "She doesn't think anything's wrong with her. She has a heart of gold."
Jennifer's aunt, Kathy Weingart, said that at one point in time, Jennifer's doctors wanted to institutionalize her, but her parents wouldn't let that happen. Michael and Marilyn learned how to take care of Jennifer so she can stay with them for as long as possible.
Dr. Nigro put her on a regimen of vitamins, which along with a positive attitude, has helped.
"I am a firm believer in mind over matter," Marilyn said. "Jenni's doing well because we keep her going. She's amazing."
Not only does the family keep Jennifer's spirits up, it has established a routine of normalcy in her life, Marilyn said.
"She's never been treated like she's handicapped," Marilyn said. "She doesn't think she's handicapped."
Michael tries to get his daughter anything she wants. He is now struggling to give her the opportunity to meet Alan Jackson, her favorite country-western singer.
"She's my little angel," Michael said. "I love her very much. A day doesn't go by when I don't tell her that or she doesn't tell me that. We're very close."
Great accomplishment
One of Jennifer's greatest accomplishments in her life was graduating from a public high school in Texas where handicapped students were "mainstreamed," attending classes with everyone else. Jennifer had quite a few friends there, and was even invited to prom with other graduating seniors.
"When I saw Jennifer graduate, I knew we finally made it," Marilyn said. "I never dreamed I'd see her do the things she's done."
At MASCO, Jennifer has five nurses who work with her. One of them, Paula Kohler of Austintown, has worked with Jennifer for seven years.
"She really brought a joy to my life," Kohler said. "She cares about people. She gets really upset when she can't come."
Michael and Marilyn know that life has been hard for Jennifer, so they don't allow negative attitudes around her, Marilyn said. They like to keep everything light-hearted and fun. They consider her a blessing because she has shown her parents and her brother, Mike, 33, what really matters in life.
"Our son, Mike, calls everyday," Marilyn said. "He always wants to help. He said that's what families are for."
Jennifer became an aunt about two years ago, and she gets along great with her nephew, Gage, Marilyn said. Gage will just walk into her room and spend time with her, Marilyn said, noting that the toddler has brought a lot of life into the Weingart household.
But it's Jennifer who's "made this family so close," her mother said.
"She's kept us together. I used to pray that she'd get better. After a while, I changed, because if that's what God gave us, then I needed to pray for the strength to make it through this," Marilyn said. "If I could go back, I wouldn't change a thing."
spoulton@vindy.com