cbd oil for sanfilippo syndrome

Josiah’s painful journey: Diagnosed with incurable disease, family of 8-year-old Barstow boy tries to make him comfortable

Diagnosed with incurable disease, family of 8-year-old Barstow boy tries to make him comfortable

BARSTOW — Behind Josiah O’Neal’s big smile lies a disease that doctors say will cut short the life of the 8-year-old boy.

Josiah was diagnosed with Sanfilippo Syndrome earlier this year. It’s an incurable disease that mimics symptoms of autism and has been dubbed the child’s version of Alzheimer’s disease, said his mother Heather Shull.

“Sanfilippo has already taken his voice and he hasn’t spoken in over a year,” said Shull, who lives in Barstow with her three children. “He has seizures, behavioral issues, a cognitive delay, hearing loss and he can barely sleep — all due to this awful disease.”

Josiah, who undergoes daily physical therapy sessions, will soon lose the ability to walk and eat, and will be riddled with joint pain and migraines. He was recently measured for a wheelchair and currently takes several medications.

With no cure or treatment for Sanfilippo, his mother has no choice but to make Josiah as comfortable as possible while her family “watches him slowly die,” said Shull, who is trying bring a sense of normalcy to his life.

Josiah attends a San Bernardino County special education program at a local school, where educators work with the boy who has the “capacity of an 18-month-old, but trapped in an 8-year-old’s body,” Shull said.

“He’s been attending since preschool and I love his teacher,” said Shull, a Pismo Beach native who moved to Barstow when she was 16 and helped her father, David, run the Skyline Drive-In. “It’s hard to trust someone with your special needs child, but I feel very blessed with the care they’ve given him.”

Shull said Josiah enjoyed his recent outing to the “Winter Wonderland” party at the Inland Empire Ronald McDonald House in Loma Linda, a holiday-themed event that was filled with food, activities, music and a visit from Santa Claus.

Until his diagnosis, Josiah had been designated a “special needs child,” with the young boy suffering with a variety of medical issues.

Since age 3, he endured more than five tube surgeries on his ears and a bilateral cord lengthening surgery. He also endured over 25 different tests, all with the hope of determining what exactly was wrong with the raven-haired boy who loves to watch cartoons, dance and interact with people, Shull said.

Before his diagnosis, Josiah visited four different doctors in two years looking for answers. But the joyful and painful answer finally came after Shull met Dr. Camacho, a geneticist at Loma Linda University Children’s Hospital who was determined to solve the mystery of Josiah’s sickness.

“Dr. Camacho sat with us for three and a half hours asking multiple questions about Josiah’s everyday life,” Shull said. “He believed Josiah had one of the Lysosomal storage diseases.”

After testing Josiah for the disease, Shull said she was initially “overjoyed” by the thought of finally having an answer for why her son was ill, but she had no idea the answer would be so “devastating.”

Josiah was diagnosed with MPS3A or Sanfilippo Syndrome type A, an inherited lysosomal storage disorder that mainly affects the brain and spinal cord, and is caused by a defect in a single gene.

“This disease will take everything from my son,” Shull said. “Studies show children with Sanfilippo live to be anywhere between 12 to 15 years of age. That is a tough pill to swallow.”

In an attempt to increase his quality of life, Shull began giving her son a synthetic version of soy extract and Charlotte’s Web Oil, a CBD-based liquid that contains minimal THC, the chemical compound found in cannabis that creates a psychoactive high.

“It’s helping him with his motor function and with his legs — he’s also gained back a bit of his speech function,” Shull said. “He has home therapy six days a week, which is also helping.”

Charlotte’s Web and similar CBD products have been used successfully to treat epilepsy in toddlers and children, the company and several consumers claim.

“When your child is suffering, you do everything you can to bring them comfort,” Shull said. “I did a lot of research on the soy extract and CBD and it has helped many children.”

“Making sure Josiah is as comfortable as he can possibly be and that my other children do not go without things they need is extremely important to me,” Shull added.

Two Districts in Central Florida Will Allow Medical Marijuana on School Grounds

While many might associate the phrase “trickle-down effect” with right-wing economic policy, you might now want to re-think that notion, considering what’s happening in the legal marijuana community.

On Wednesday, two school districts in central Florida announced they will be allowing students to bring their medical marijuana on school grounds.

The move comes on the heels of a ruling in California last Friday, where Santa Rosa Judge Charles Marson ruled in favor of 5-year-old medical cannabis patient Brooke Adams, who suffers from intense epileptic seizures. Additionally, a Broward County school district ruled in favor of a similar change in policy just last month.

A trickle-down effect, indeed.

Two Districts in Central Florida Will Allow Medical Marijuana on School Grounds

Following a pair of county meetings on Tuesday night, school districts in Orange and Volusia counties made the executive decision to allow for the medicine on-campus.

The Orange County school board decided that young medical marijuana patients will be allowed to receive the medication from a caregiver—not affiliated with the school in anyway—so long as they have the proper documentation from a medical professional.

In Volusia County, the decision hit closer to home, due to one student’s rare disease that requires on-site medical marijuana.

Zoe Adams, who suffers from Sanfilippo syndrome—a rare disorder similar to Alzheimer’s—is prescribed CBD hemp oil for her illness. Zoe suffers random seizures throughout the day due to her ailment.

Under the new policy—compassionately titled “Zoe’s policy,” medical cannabis can now be administered on-campus by a parent or hired caregiver. The process will be required to be carried out in private, as neither staff nor students are permitted to be in the area.

Zoe’s parents expressed their gratitude following the much-anticipated decision. Zoe’s father, J.J. Adams, says the decision not only directly effects his daughter, but everyone involved throughout the process.

“It’s quality of life, it’s what these kids need, and it helps them, the parents, the teachers, it’s all around beneficial,” Adams said.

Volusia County School Board Chair Linda Cuthbert hopes that Zoe’s case will actually have a “trickle-up” effect. Despite the drug’s lingering Schedule I status, she believes that it’s not crazy to think more cases like this will open the eyes of federal officials.

“She’s always going to live forever because of Zoe’s Policy,” Cuthbert said to Volusia County’s local ABC affiliate. “We know we’re doing the right thing. We hope the federal government will understand what we’re trying to do.”