Although Johanna Benthal has undergone a total of 79 brain surgeries since she was born, this Jamesport teenager isn’t letting her illness stop her from painting, singing and — above all else — living her life.
This Sunday, the community came out to support the 15-year-old, who suffers from cerebral cavernous malformation, during a benefit event at Martha Clara Vineyard in Riverhead.
In addition to food, wine and entertainment, there were raffles, as well as an auction of Johanna’s art work.
Proceeds from Sunday’s benefit will go to the Angioma Alliance to help pay for Johanna’s medical expenses.
Johanna’s mother, Eileen, said the disease, commonly known as CCMS, is a genetic mutation that causes vascular malformation to grow in the brain that affects some of Johanna’s cognitive abilities, such as reading and writing. There is currently no cure for CCMS.
But Ms. Benthal said she and her husband, Steve, and their children, David, 24, Anna, 21 and MaryAngela, 18, have a central focus in life to help them support Johanna. And that central focus is faith.
“It’s our faith that got us through all these years of difficulty,” Ms. Benthal said.
To share with the community how they’ve been able to get through difficult times, Ms. Benthal sang Laura Story’s “Blessings” and Johanna sang Carrie Underwood’s “Temporary Home.”
“Johanna loves ‘Temporary Home,’” Ms. Benthal said. “She said it spoke to her because it reminded her that even though there’s pain and suffering in her life right now, a pain-free whole life awaits her in heaven.”
Johanna, who turns 16 in August, said she was excited about seeing the community’s support and had fun at event because she was able to spend time with friends, family and her dog, Taffy.
“It’s a really good day,” Johanna said.
Although it rained Sunday, Ms. Benthal said she was “thrilled” about the turnout. As of 3:30 p.m., nearly 200 people came out for the “Johanna’s Hope for Cure” event.
Ms. Benthal said she attributed some of the event’s success to the Jamesport-South Jamesport Civic Association because the civic group announced details about the event at a public meeting Saturday morning.
“After they had their meeting, I was told the phone in the tasting room was ringing off the wall,” Ms. Benthal said. “We are way over what we thought we would have.”
Georgette Keller, president of the Jamesport-South Jamesport Civic Association, said she was pleased that word spread quickly to promote the event.
“We’ve watched Johanna grow up in the community and we admire her,” Ms. Keller said.