Woman Helps Santa Spread Holiday Joy To Others With Disabilities

CUTCHOGUE, NY — Johanna Benthal, 25, of Jamesport, has faced daunting medical challenges and scores of surgeries due to a disease that causes hemorrhaging in the brain, seizures, and small strokes — but despite battling physical hurdles, her inner faith and spirit have been a shining light, guiding her path and illuminating the way for others.

Now, Johanna has partnered with Stacey Soloviev, who helms Santa's Christmas Tree Farm LI in Cutchogue, for "Sensitive Santa" nights, from 4 p.m. to 7 p.m. on December Wednesdays; the final event take place on December 15.

"Johanna Benthal is a young adult entrepreneur with disabilities who has a passion for inspiring kids with special needs to find their gifts and purpose — even in the midst of difficulties," Soloviev said. "She is excited about partnering with Santa to assist with the Sensitive Santa experience at our farm."

Santa's Christmas Tree Farm in Cutchogue began offering the "Sensitive Santa" events in 2019, uniquely tailored to help children with special needs enjoy the season.

"Sensitive Santa" hours are especially for kids with special needs and special sensory needs, said Soloviev, who helms the store.

"We keep the shop calm, lights dim and music off," she said.

The events are free and include hot chocolate, popcorn and cookie-decorating kits.

According to Eileen Benthal, Johanna's mother, the collaboration between Soloviev and her daughter began over an advent calendar that she'd wanted to buy for Johanna. Johanna had been hospitalized and not released until Christmas Day, but Benthal wanted the advent calendar, anyway, and reached out to Soloviev to see if she could still buy one. Soloviev opened the store just for her, and Benthal was able to give it to her daughter a few days later, for Little Christmas.

"For us, it started with a quiet act of kindness," Benthal said. "That quiet act of kindness, began a friendship. It just touched me deeply."

After that, Soloviev came to "Jo's Farm and Cottage" — the Benthal family has created an art space for Johanna in a bright yellow cottage; the backyard space has grown to include the farm, with chickens and goats — to ask Jo if she would help as a greeter for Sensitive Santa, Benthal said.

"She also offered to get Jo set up as a beekeeper by purchasing a specialized hive to enable Jo to watch the bees at work and collect honey through a tap system, or Flow Hive."

Benthal and her daughter are taking a beekeeping class with Master Beekeeper Chris Kelly.

"Chris is going to mentor us to help add bees to Jo's Farm," Benthal said.

And now, the Benthals are giving back to others with disabilities, sharing their joy and deep faith with others.

Their family began raising the chickens and goats during the pandemic to keep Jo busy at home, Benthal said. "Our backyard endeavor has developed into an informal offering of 'Arts on Jo's Farm' workshops and outings."

The Benthals have hosted informal programs and helped to connect other young adults with disabilities for farm and art community experiences, she said.

"Jo just shares with other people the things she loves — dogs, art, baking and hanging out on her backyard farm," Benthal said.

Benthal said when Soloviev asked Jo to partner with her for Sensitive Santa, "Jo was very 'egg-cited' and thought it was an 'egg-cellent' idea. Everything is now chicken humor!"

The Sensitive Santa events give Jo a chance to greet and encourage other kids with disabilities, Benthal said. "And, of course, to spend time with her favorite 'North Fork Santa,' who is also our dear friend and neighbor. She now tells people she works with Santa on Wednesdays!"

Benthal added: "It's all about finding purpose and hope. Johanna always leads the way."

The Benthals are also working on creating a non-profit, "Johanna's Hope" to continue their mission of giving back.

"'Johanna's Hope' comes out of our own experiences," Benthal said.

What began as just an art space and farm for her daughter has blossomed into a place for healing and memories for many, Benthal said. "We realized how therapeutic it was for Jo. When people came to buy eggs, Johanna wanted to show them around; it gave her tasks to do, to keep her focused. Then, other people with disabilities started coming. It's a beautiful community that's starting to grow."

Soloviev said helping special needs' children is a cause close to her heart. "I'm very passionate about it," she said, adding that she was the parent advocate on the committee for special education at John M. Marshall Elementary School in East Hampton. "Some of my children had sensory integration and took a long time to adjust. We were asked to leave all groups, library groups, swim lessons, etc. So I built a handicapped playground at the JMMES to raise awareness that all children deserve to play."

After the playground was built, she said, change commenced, and new programs were created.

"I know what it's like to be scared to take a child somewhere where they might freak out, and being embarrassed. So I want parents to know there is a safe place where they can take all the time they need, and their kid can freak out without judgment," Soloviev said. "We are all in this together."

Santa's Christmas Tree Farm LI has always been a special place for Johanna.

In 2019, Johanna won First Place in the professional class at the first-ever "Gingerbread House" event, hosted by Paul Drum Life Experience Project. Johanna's gingerbread house was a replica of "Jo's Cottage," her art space at home.

Paul, who also works at Santa's, and Johanna are good friends.

Benthal 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.

When Eileen and Steve Benthal learned that their three-month old baby Johanna needed brain surgery, it was faith, and infinite love, that kept them strong.

When Benthal spoke to Patch in 2012, she said that, after 15 years and 79 surgeries, the Benthals learned that their daughter had cerebral cavernous malformation, or CCM3, a potentially deadly disease that causes vascular malformations in the brain — a disease for which there is no cure.

To date, Johanna has now undergone more than 100 surgeries.

"You go a little bit forward, and then it's backwards," Benthal said, in a 2013 interview.

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. Johanna is a gift in our lives."