Hope for Johanna: Community Rallies for A Cure

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.

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.

On Sunday, the community will come together at Martha Clara Vineyard from 2 to 6 p.m. for "Johanna's Hope for A Cure," a benefit to help raise funds for The Angioma Alliance. Tickets cost $50 and are available at the door, by going to www.facebook.com/johannashopeforacure or by calling Eileen Benthal at 631-833-1897 or emailing eileenbenthal@gmail.com.

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, 24, Anna, 21, and MaryAngela, 18, 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 plans 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."