"He's a happy little boy." Kara Fox says this over and over during our phone conversation. She's talking about Julian Gaube, her 5-year-old, who suffered brain damage at birth and has since been diagnosed with cerebral palsy and a rare form of epilepsy, Lennox-Gastaut syndrome, that is difficult to treat.
"He's always been happy," she said. "Even though we know that he struggles, I don't think he knows. He has a seizure, and the next minute he's smiling." In fact, Julian has had many different types of seizures multiple times a day, Kara says, and he's been on many types of seizure medications, undergone hospitalizations, had various alternative healing treatments and been on a course of steroid treatment. And yet, somehow, he's happy.
Kara and her husband, Dan Gaube, both 1995 graduates of Monte Vista High School in Danville, live in the North Lake Tahoe area, and have high hopes that one day Julian will be seizure-free without any detrimental side effects.
A negative side effect of his medications (which haven't curbed his seizures) is that they make him too sleepy to be alert and functioning. After 10 months of research, Kara said she and Dan decided to try an alternative medicine for Julian that isn't covered by insurance. Cannabinoids, or CBDs, are the medicinal part of the marijuana plant and don't carry a "high." Research in Britain found that CBDs are an effective treatment for seizures; U.S. studies on CBDs and seizures in children are due to begin soon, Kara said.
"I make a tincture for Julian and just put it in his mouth," she told me. "We both have caregiver licenses and Julian has a medical marijuana card. We want to make sure what we're getting is organic and high in the CBDs. I make his tincture, extracting just the medicinal part, and use organic alcohol and organic olive oil. Since starting Julian on CBDs on Aug. 12, we have seen improvement in his seizures and cognition. He has already gone seizure-free a few days, and when he does have seizures they are less frequent and shorter in duration. His therapist and teachers have reported a vast improvement in his skills and communication since beginning the new medication."
Because the treatment, which is very expensive, isn't covered by insurance, the family is hosting a fundraiser in downtown Truckee, from 5 to 10 p.m. Friday at The 101 Live, 10152 Church St. In addition, those who would like to donate to the cause may go to https://www.giveforward.com/fundraiser/vzx2/fundraiser-for-julian. The family's goal is to reach $30,000, and they've already raised more than $4,000.
Dan's parents, Don and Jane Gaube, live in Alamo, where he grew up. Kara moved to Danville from the Chicago area when she was a junior, and she met Dan in English class during their senior year. They were high school sweethearts, but parted ways, she to attend a small liberal arts college in West Virginia and he to attend Lewis & Clark College in Oregon. They lost touch for about five years, but were reunited in 2002 when Kara found him through a mutual friend. She said she started driving back to California immediately after talking to Dan, and he hopped on a bus and met her in Davenport, Iowa, to drive back to the Bay Area with her. They lived in the Bay Area for a few years, were married in 2007, and now live in Tahoe.
"We were lucky enough to find jobs up here," Kara said. "We're outdoorsy people. We put Julian on a paddleboard on his tummy and go camping and kayaking. He loves it!"
Dan's a wildlife biologist and woodworker, and she was an English and journalism professor at Sierra Nevada College in Incline Village before Julian required full-time care.
Kara and Dan are both crafters; she makes sea glass and abalone jewelry, and he makes tables with inlay. They sell their works at the Truckee Artisans Market Place. Kara said they come to the Bay Area often (Julian receives treatments at UCSF), and enjoy visiting friends and family here. To follow Julian's journey and for further information, visit http://www.caringbridge.org/visit/juliangaube.
Got pets?: Peace Lutheran Church's annual St. Francis Animal Blessing and Pet Festival will be noon to 3 p.m. Oct. 6. Individual pet blessings will be given by pastors Steve Harms and Margareta Johansson. Also featured are pet adoptions, live music and a silent auction, all to take place on the lawn in front of the church at 3201 Camino Tassajara in Danville. Exhibitors include ARF (Tony La Russa's Animal Rescue Foundation), Guide Dogs for the Blind, the Feral Cat Foundation, Rottie Angels Rescue, Fun Dawgs Training, Pets Eternal Rest, Hospice of the East Bay's Pet Bereavement, the East Bay Dog Listener and Precious Puch.
"The donations have been great. Money we raise supports church functions," said Greg Grebe, congregation member and organizer of the event. "We'll also have a barrel out for donations to the food bank." For further information, visit http://peacejourney.org/ or call 925-648-7000.
Contact Georgia Lambert at firstname.lastname@example.org.