Pleasant Grove community rallies around 4-year-old boy with rare disease

Published: Friday, May 31 2013 11:30 a.m. MDT

Nami Vimahi has a rare genetic mutation known as tuberous sclerosis complex, which causes him to have up to 300 seizures a day. Nami is 4, the child of Salesi and Annaka Vimahi.

Vimahi family photos

PLEASANT GROVE — The kids who go to Pleasant Grove High School know how to bring it.

They learned about a serious need — sociology teacher Annaka Vimahi's little boy has tuberous sclerosis complex — and pulled together to raise more than $44,000 to help pay for his brain surgery and aftercare.

They competed in a penny war that made loose change a hero. (Pennies donated earned a teacher's room points. Silver coins and paper money took away points, so it paid to donate big bucks to bomb each other and rob another room of points.)

They staged a carnival that included face painting, fruit kabobs, balloon animals, a dunking booth, pizza, popcorn and cotton candy for sale, along with a guest appearance by Nami Vimahi, the focus for all the attention.

They auctioned off a quilt and a pair of Lehi Roller Mills gift baskets.

They held a movie night, a "Dancing with the Stars" night and a yogurt night with all proceeds going to Nami's needs.

They hosted an all-night volleyball tournament where $3,500 was raised.

One donor pledged to match the first $5,000 in donations. Students in other schools in the district heard about the family and contributed to a bank fund set up for Nami.

People donated frequent flier miles to help with travel needs.

And the kind moves continue. A Pigstock band festival is coming up on June 1.

The level of interest and charity has amazed Annaka Vimahi and her husband, who are relying on their faith and friends to get them through Nami's difficulties.

"I’m a keep-to-myself kind of girl," Vimahi said in an email to her colleagues explaining her son Nami's rare condition, which causes him to suffer hundreds of seizures every day, "but these past few years have pushed me to do things I never thought I’d do; one of those being to open up and ask for help."

Nami, who's 4 years old, has tumors on his heart, kidneys and brain, as well as cysts and tumors on his eyes. As a result of the community's generosity, a surgeon in New York City will attempt to remove some of the tumors in his brain.

Dr. Howard L. Weiner, a pediatric neurosurgeon at NYU Langone Medical Center, plans to open Nami's skull on both sides and try to track which tumors are sparking his seizures. If the tumors causing the seizures can be located and removed, Nami's seizures may let up enough that he and his parents can focus on him learning to talk and walk.

The surgical process is scheduled to start in July and proceed over the next couple of months.

The family will need to stay near New York until he can heal enough to return home.

In April, Vimahi simply asked her colleagues to smash and save their soda cans so she could recycle and turn them in for cash to help the family meet expenses. (Their insurance covers a good portion of the actual medical care but not travel or lodging expenses.)

Principal Tim Brantley got wind of her situation and took it to the student council. The teenagers, especially the journalism class members, took it from there.

"It's proved to be a great opportunity for the students to serve," Brantley said. He credits the school newspaper staff with creating the energy wave for Nami, and he bought doughnuts Wednesday for the entire student body to say thank you.

In a little over a month's time, the students raised a record amount.

"I don't know exactly how it happened," Vimahi said. "The students just went crazy. It's insane."

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