COUDERSPORT — As a mother who lost two young children to a terrible disease, Jessica Bonczar Kenley understands and knows the profound, lasting grief encountered by parents with similar tragedies.
It is for this reason that Kenley, author of the online book, “Kidowed,” and resident of Coudersport, is starting a Survivors Anonymous support group for parents who have lost their children. The group will hold its first meeting at 8 p.m. Jan. 17 in the First United Presbyterian Church at 402 N. Main St. in Coudersport. Kenley said the groups will meet at the same time every first and third Wednesday in the Fireside Room of the church and coffee and snacks will be provided.
“I am starting the group because I lost two children about 10 years ago, and I have found that group therapy has been the most helpful to me,” Kenley said. “People who have lost children grieve differently and more profoundly than others, and for a longer period of time,”
Kenley said it is her hope the group will not only help parents support each other, but will “lift each other up in our time of bereavement.”
A native of Buffalo, N.Y., Kenley had moved to Coudersport with her parents at the age of 12. A 1999 graduate of Coudersport Area High School, she went on to earn a veterinary technology degree and had taught at the Vet Tech Institute in Pittsburgh.
She currently is a single mother of an 8-year-old daughter, Lillian, and 4-year-old twin sons, Henry and Jackson. Her first two children, Ethan and Kaylee, suffered with a rare and fatal skin disease, epidermolysis bullosa.
She said Ethan lived to be 7 months old, and about three years later, her second child, Kaylee, died from the disease at just 3 months. At the time of her daughter’s death, Kenley had divorced her husband. She had moved back to Coudersport from Pittsburgh to live with her parents, Brenda and Bill Bonczar, who helped her care for their granddaughter during her short life.
“Parents who have lost their children often identify that part of themselves first,” Kenley explained. “Like alcoholics and addicts they’re a bereaved parent first — they view the whole world differently at first — it really changes people.”
Kenley said her ebook “Kidowed” is available on Amazon and Smashwords.
“It was my journal when my daughter was alive,” she said of the book. “She only lived to be 3 months old, so she died fairly early in the book. The rest of it is about me dealing with other people’s reaction to me and my emotional turmoil.”
Kenley said she hopes the book will spread awareness and funding for the disease which causes blistering on a child’s skin from any type of mechanical friction. Severe blistering can lead to the loss of damaged skin, resulting in bandaging on most of the body throughout the child or individual’s life. Those who live longer with the disease often deal with amputation of the limbs and other related health issues.
“My hope, of course, is that a cure may someday be possible,” Kenley said of her primary purpose for publishing the book which shares her “struggles, sorrows and triumphs … punctuated by unexpected humor, endless love and examples of family strength and support.”
Kenley said she had many positive responses from people who read the book.
“It did really well for a self-published book,” Kenley added. “I was surprised, because I was really angry when my children died. I just couldn’t believe I’d gotten a raw deal in life that was so unfair.”
When she published the book she was uncertain if anyone would find it comforting. As it turned out, the book had 120 reviews on Amazon and received a four and a half star rating. At present, it has been read by 120,000 people.
For more information on the support group or the book, contact Kenley at kidowed@gmail.com.
