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North Hills teen tries to fit in despite lifelong illness

| Sunday, June 21, 2015, 9:00 p.m.
Antoinette Woods, of Ross Township stays with her daughter Jenevieve Woods, 17, who has mitochondrial disease, as she undergoes a drug trial at UPMC Montefiore in Oakland.
Jasmine Goldband | Trib Total Media
Antoinette Woods, of Ross Township stays with her daughter Jenevieve Woods, 17, who has mitochondrial disease, as she undergoes a drug trial at UPMC Montefiore in Oakland.
Jenevieve Woods, 17, of Ross Township, who has mitochondrial disease, winces while working with exercise physiologist Steve Anthony as part of a drug trial at UPMC Montefiore in Oakland.
Jasmine Goldband | Trib Total Media
Jenevieve Woods, 17, of Ross Township, who has mitochondrial disease, winces while working with exercise physiologist Steve Anthony as part of a drug trial at UPMC Montefiore in Oakland.
Jenevieve Woods, 17, who has mitochondrial disease, spends a lot of time in her bedroom. 'Whenever I'm tired I use this lovely couch to chill out on,' she says.
Jasmine Goldband | Trib Total Media
Jenevieve Woods, 17, who has mitochondrial disease, spends a lot of time in her bedroom. 'Whenever I'm tired I use this lovely couch to chill out on,' she says.

From her first breath, Jenevieve Woods gurgled as if she were underwater.

Staff at Passavant Hospital in McCandless rushed her to the neonatal unit. Upon learning of the medical problems of her 18-hour-old daughter, Antoinette Woods of Ross unraveled the blanket and studied her face.

“She's as beautiful as a little peach,” Woods remembered thinking when she saw the infant's complexion. “This is the baby I have. This is the baby I was given, and I'm going to stay with her, and I'm going to make it the best I can make it.”

“So I always called her Peach,” Woods said.

Since her first day 17 years ago, Jenevieve has struggled — first to breathe, later to walk and talk, and now to fit in with others. She was born with mitochondrial disease, an illness that saps her energy.

The mitochondria, found in nearly every cell, make energy for the body. People with the disease might have a muscle disorder, blindness, deafness or another problem that could lead to early death.

About to start her senior year at North Hills High School, Jenevieve inherited this form of the disease from her mother. Her brothers Jesse, 20, and Joshua, 14, have it, too, to a lesser extent.

When Jenevieve was 2½ years old, she still couldn't walk. If she did not try to walk, a therapist warned, she might lose her ability to do so.

Distraught, Woods made a chocolate cake with chocolate icing and pink sprinkles and urged Jenevieve to walk to it. Jenevieve said she could not do it, and her mother made her go to bed hungry and crying.

The next day, Woods set out the cake with birthday candles on it. She sang “Happy Birthday” six months early and urged her daughter to walk to it. For more than a half hour, Woods recalled, Jenevieve took baby steps, fell down and got up until she reached the prize. Then she blew out the candles and devoured some cake.

“Every single day for a month, I made a cake to get her to move,” Woods said.

Daily routine

While classes are in session, Jenevieve rises at 4:30 a.m. to catch a 6:45 school bus. She rolls out of bed onto the floor, with the thud acting as an alarm clock for her mother to get up and help.

Jenevieve crawls on the floor to the bathroom, slaps her eggplant-purple legs and sprays them with scalding hot water in the shower. The routine helps circulate the blood and loosen her muscles.

Jenevieve sometimes stutters when she tries to muster the energy to talk. She drags a carry-on suitcase behind her as she wobbles down the hallway between classes. The suitcase helps steady her and also carries her books. Sometimes, she said, she falls in the hall.

Her symptoms make other students reluctant to befriend her, she said, and she has yet to have a first date.

“All the IVs, walkers and wheelchairs don't make a 17-year-old sexy,” she explained.

She calls herself “the invisible girl.”

A boy did invite her to the junior prom, though. She bought a $256 purple beaded dress — “not too conservative, but not slutty,” she said. A week before the big dance, she said, her date backed out. He did not even give an explanation. The dress hangs unworn in her closet.

“I would like someone to lean on, someone to tell my problems to and to make me feel normal,” said Jenevieve, her voice aching.

Drug trial

Jenevieve lay in a bed at UPMC Montefiore hospital in Pittsburgh during phase two of a trial of an experimental drug to slow her disease and boost her energy. An overhead plastic bag dripped the synthetic drug Bendavia through an IV into her arm.

She was the first person in Pittsburgh and one of 10 in the country to take part in this stage of the trial, said Dr. Gerard Vockley, chief of medical genetics at Children's Hospital of Pittsburgh and the leader of the study in Pittsburgh.

“If we could make her muscles stronger, her thought processes clearer, help her to be better able to eat and digest food, that's going to make a big difference for her,” he said.

If the trial doesn't work, she will get other experimental drugs. It that doesn't work, she hopes the experiment eventually helps somebody else.

In the meantime, Jenevieve said, the disease has been a gift of sorts.

“I definitely see the world differently,” she said. “I don't see it as have and have not. I see it just as today might be a bad day. Tomorrow might be better.”

Bill Zlatos is a staff writer for Trib Total Media. He can be reached at 724-772-6353 or bzlatos@tribweb.com.

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