Ross woman documents struggles with mitochondrial disease
She writes book of poems, autobiography
Four years ago, Jenevieve Woods learned that doctors had misdiagnosed the condition that makes her stutter and stumble. Instead, she has mitochondrial disease, a rare and possibly deadly genetic illness that saps the energy in her cells.
Rather than sit and pout, Ms. Woods, 20, of Ross wrote an autobiography and book of poems to help people with her disease and those with other conditions that might set them apart.
“I live every day as if it’s my last,” she said. “I don’t spend time crying about my situation because there’s other stuff I could be doing.”
Ms. Woods will sign the second edition of her autobiography, called “Peach” and her anthology, “My Poems are Yours: The Poetic Soliloquies of Hope and Courage,” from 2 to 3 p.m. Feb 11 at Riverstone Books in McCandless Crossing. The books can be bought on Amazon for $12.95 each.
“Peach” is her nickname, a tattoo of which is etched on her left arm. Her mother, Antoniette DeLorenze, gave her that nickname when medical staff told her that her infant daughter needed to be institutionalized.
Ms. DeLorenze cradled her swaddled baby in her arms and thought, “You look like the perfect little peach to me. I don’t care what people say. It’s just you and me, Peach.”
Ms. DeLorenze kept her baby. The mother has two sons, Jesse Woods, 22, and Joshua Woods, 17, who also have the disease.
Mitochondrial disease is a collection of about 250 energy disorders afflicting about one in every 5,000 people, said Philip Yeske, science officer for the United Mitochondrial Disease Foundation in Plum. The mitochondria are the part of a cell that supplies energy. When there is a deformity in the mitochondria, the cell cannot supply enough energy to make an organ or muscle work properly.
“The range is from young to old from mild to lethal,” Mr. Yeske said. In younger patients, he added, the disease is more likely to be lethal.
He said some forms of mitochondrial disease are passed from the mother and other forms from one or both parents.
Wiping the tears from her face, Ms. DeLorenze remembered when Dr. Amy Goldstein, then of Children’s Hospital of Pittsburgh, gave her the news that every parent would dread: Her children inherited mitochondrial disease from her.
“I left the room and went out in the hallway sobbing,” Ms. DeLorenze said. “I gave my kids a death sentence. I know that I am going to lose my daughter, and I am responsible. I have to realize I created three children that suffer and they suffer a lot, and I can’t stop it, and it’s hard.
“It’s probably what’s made me different from other people. I’m aggressive and don’t follow convention because my kids are not conventional. All I can do is make every day I have with her the best.”
Dr. Goldstein, now clinical director of the Mitochondrial Medicine Frontier Program at Children’s Hospital of Philadelphia, sees no reason now why Ms. Woods should die young. “We’ve learned these disorders are less predictable than we originally thought,” she said.
But she admits her patient’s balance and fatigue have worsened. Ms. Woods said she drops objects a lot. She has trouble feeling the bottoms of her feet. She has trouble urinating. And it’s harder for her to see.
Ms. Woods is taking part in a global study of the experimental drug, elamipretide. She injects it into her abdomen every day. Dr. Goldstein said it’s too early to say how the drug is working for Ms. Woods.
Besides the physical symptoms of her affliction, Ms. Woods also had to deal with how she was treated by her peers.
Her years at North Hills High School proved to be a daunting challenge. She dragged a carry-on suitcase down the hallways to steady herself from falling. She sometimes would fall anyway, she recalled, and students would walk by. She spent a semester eating alone without anyone asking her why. A former girlfriend shunned her.
A boy asked her to the prom, though. Her family bought her a sleeveless black dress encrusted with rhinestones. “She looked like a supermodel in it,” recalled her stepfather, Mark DeLorenze.
A week before the big event, the boy broke off the date. He gave no explanation. The dress hangs in her closet with the tags still on.
Ms. Woods felt so alone that she wrote a poem called “The Invisible Girl.”
“A lot of our young adults and teens feel isolated like Jenevieve,” said Nicole McCaslin, a regional coordinator of the United Mitochondrial Disease Foundation. “They may not look sick, but when they can’t do things their friends are doing like playing soccer or any other sport, it makes them isolated.”
Ms. Woods attends La Roche College where she majors in psychology. She wants to be a child life specialist at Children’s Hospital of Pittsburgh of UPMC, making sure youngpatients are happy.
Until then, Ms. Woods writes. Dr. Goldstein calls writing part of her patient’s odyssey of coping with her disease.
“When you finally get that diagnosis, you’re grateful for finally having an answer,” Dr. Goldstein said. “But then you learn the condition can be lethal, and then there are mixed emotions.”