Quantcast

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

Published: Friday, May 31 2013 11:38 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) 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.

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) 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)

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."

Vimahi said that while she likes to avoid the spotlight, she realized early on that Nami is blessing others as they unite to serve and help him. "God made me Nami's keeper. I don't get to choose who's blessed by him. That helped me get over it (wanting to keep the need private)."

She's had a feeling since Nami was 3 weeks old that he had serious physical problems. Tuberous sclerosis is a new genetic mutation that current estimates say occurs in 1 out of every 6,000 births, according to the Tuberous Sclerosis Alliance. At 4 months, it was confirmed in Nami.

"While it was hard for Annaka to put herself out there initially when letting us know of her needs, and opening herself up to vulnerable feelings, I think the benefits to the entire school have been incredibly wonderful," Lynette Buck, a fellow teacher, said. "The camaraderie among staff, students and community has never been stronger. This cause has united our school and brought about more school spirit then any other single event I have witnessed.

"The good that has come from her little family's trial cannot be measured in the amount of money collected or donated. It has been an amazing effort."

Susan Shelton, the adviser for the journalism class, said it has been wonderful for students and teachers alike. The unusual take on the penny war came from the kids, she said. "It was the student's ideas that really worked.

"It created rivalries between classes. My class actually lost to the chemistry teacher, so we had to make breakfast for them. I was bombed $250 in one day. Another teacher was bombed $800," Shelton said. The penny war alone raised $24,000.

Vimahi said the efforts have lightened her family's load. They laugh more and feel tremendous comfort in knowing so many other people care.

"We are thankful for the money but the feeling of support and comfort and love is what is getting us through," she said.

Those interested in following Nami's story and progress can visit afteritsoaksin.com.

Sharon Haddock is a professional writer with more than 35 years experience, 17 at the Deseret News. Her personal blog is at sharonhaddock.blogspot.com. Email: haddoc@deseretnews.com

Copyright 2015, Deseret News Publishing Company