A Jamesport teen who has been a source of faith and inspiration for the community is in need of prayer, her mother said.
Johanna Benthal, 16, has faced a long road since first needing brain surgery when she was only three months old.
The Riverhead community has watched as her family, with faith and love, has guided their daughter through medical challenges -- and has come together to offer support through fundraisers, including an event called held last year at Martha Clara Vineyard organized to help raise funds for The Angioma Alliance.
Although she declined to be quoted in an interview, on her Facebook page, Johanna's mother, Eileen Benthal, wrote Wednesday, "Urgent prayers appreciated. Johanna has been declining since surgery and shuntogram concluded again that her shunt is not working. She is in terrible pain. . . ."
On Thursday morning, Benthal wrote, "Johanna had a quiet night in ICU. She appears stable. The plan is to move her out of ICU today and watch . . . This is a totally new, higher pressure shunt valve so I need to see that it works well for Johanna before I take her home. Thanks for your continued prayer and well wishes."
Benthal thanked the community for her prayers; scores of concerned friends and residents have sent prayer and love on both her Facebook and CaringBridge pages.
Later, Benthal wrote that she had "just finished singing Johanna to sleep in the operating room. Very peaceful transition. I am grateful for the Sign of the Cross I place on her forehead."
On CaringBridge, Benthal has chronicled Johanna's latest medical challenge, including surgery, which initially "went well," she said. "We are very grateful for prayers and positive thoughts. Blessings and healing come through raindrops and tears all to remind us this is our temporary home. Jo was singing just before . . . such a miracle," she wrote earlier this week.
When Jamesport residents Eileen and Steve Benthal learned that their 3 month old baby, Johanna, now 15, needed brain surgery, it was faith, and infinite love, that kept them strong.
When Benthal spoke to Patch last April, she said that, after 15 years and 79 surgeries, the Benthals learned that their daughter has cerebral cavernous malformation, or CCM3, a potentially deadly disease that causes vascular malformations in the brain -- a disease for which there is no cure.
The disease, Benthal said, causes hemorraghing in the brain, seizures, and small strokes. "You get a little bit forward, and then it's backwards," she said.Although the disease is not cancer, it spreads, Benthal said, putting pressure on the brain, with some of the malformations deep in the brain and inoperable. "They are all a fatal risk," Benthal said. "She wants a cure."
Johanna, due to her disease, cannot read or write with fluency, although it doesn't stop her passion for learning, her mother said.
But despite her daughter's challenges, faith has given her infinite strength, Benthal said. And it has brought their family, including the Benthals' other children, David, Anna, and MaryAngela, closer.
"Johanna is truly a miracle, she just really defies science and reason and keeps on going," Benthal said. "She has always had a tremendous faith and an optimistic outlook on life."
Before every surgery, Benthal accompanies her daughter into the operating room. "I sing to her, and pray with her, and bless her when she goes to sleep," Benthal said. "Johanna taps into the wellspring of faith within her."
At Sunday's fundraiser, Johanna was excited to sing the Carrie Underwood song, "Temporary Home," Benthal said. "She has this incredible eternal perspective. She knows that she’s suffering here, and she wants things to get better, but her biggest perspective is that this is not all there is. She knows there’s a heaven that awaits, where there is no pain -- and that life is more than what we see right in front of us."
Johanna's experience, Benthal said, has made her other children more sensitive young adults. "It's definitely stressful, but at the same time, it's kept us focused on the things that matter most," Benthal said. "Johanna is a gift in our lives."