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Helena Long has given gift baskets to law enforcement, held spaghetti dinners for veterans and chili dinners for firefighters and first responders.

Now, the 15-year-old needs the community’s help, though her mother says that doesn’t come easy to her.

Helena was diagnosed with Chiari malformation type I, a congenital disorder affecting the brain. According to Amira Long, her daughter’s cerebellum is descending into her spinal column by about 17 millimeters. Helena is scheduled to undergo surgery on Nov. 22 at UCSF Benoiff Children’s Hospital, Long said.

A spaghetti fundraiser will be held from 5:30-8 p.m. Saturday at the Family Resource Center of the Redwoods with the proceeds benefitting Helena’s “surgery journey.”

“Sarah Caron put it really well,” Long said, referring to the Gasquet resident and family friend spearheading the fundraiser. “She said, ‘I want to do this fundraiser for Helena, is she on board?’ When I talked to Helena, she said ‘I don’t know.’ Sarah said, ‘Would you do it for someone else?’ And Helena’s like, ‘Yeah.’ She was embarrassed, but also, when you need it, you need it.”

Caron also started a GoFundMe account for Helena.

Doctors diagnosed Helena with Chiari malformation type I in April after she had been suffering with blackouts and headaches since roughly the sixth grade. Long said her daughter had played the trumpet, but the pressure would cause blackouts in her vision so she quit band. But Helena thought that was normal, Long said.

Earlier this year, Long said she was letting her daughter drive the car in a parking lot when she noticed something was wrong.

“It was like a veil came over her face,” Long said. “She was laughing and then crying and I was like, ‘What the heck just happened?’ She said, ‘It’s OK, it’ll go away, just give it a second.’ I’m like, ‘What will go away?’”

Helena told her mother about the headaches she would get, sometimes accompanied by dizziness. They would occur every time she laughs, coughs or sneeze, Long said, so she decided to make an appointment with the doctor, who ordered an MRI.

About two weeks later, they were told to consult with a neurosurgeon, Long said. Her daughter had the choice of two different surgeries, one that involved removing a piece of the skull, giving the brain extra space to “pull itself back up.”

The second surgery involves a deeper cut through the dura — the membrane surrounding the brain — filing away some of the skull and cauterizing the bottom of the cerebellum. Removing the cerebellar tonsils allows for more free space without causing any “known neurological problems,” according to the National institute of Neurological Disorders and Stroke.

The second surgery is more invasive, Long said, but fewer patients end up needing follow-up surgeries.

“She wants to be one and done, but there’s more risk,” Long told the Outpost.

Helena will be in the hospital for five to seven days following the procedure, Long said. She’ll be back at school following winter break in January, though she’ll have a home teacher to ensure she won’t miss much work, Long said.

Even though she’s been struggling through blackouts and regular headaches from her cerebellum being pinched, Helena was reluctant to tell people about her surgery until a couple weeks ago, Long said. It was after the family received their fourth COVID booster and flu shot when Helena had a bad reaction and had to stay home from school.

Long said her older daughter, Sophie, told Helena’s teacher about her sister’s struggles for the past six months.

“I think she’s embarrassed, but appreciative,” Long said about the community’s outpouring of support. “She would do it for anyone else, but it’s hard to accept when it’s you.”

Meat and vegan options are available for the spaghetti dinner on Saturday at the Family Resource Center, 494 Pacific Avenue.
Donations include salad, garlic bread and a drink. To-go options are also available. Adults are $9 and kids are $7.

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