Making a Stand: Inside one family’s fight against neurofibromatosis

IDAHO FALLS — With his Toy Story table, rainbow umbrella and brightly colored signs, Andrew Truscott’s soda stand looks just like any other kid’s roadside stand. But while most kids hope to add a couple of dollars to their allowances, Andrew hopes to find a cure for neurofibromatosis.

Andrew is one of four members of his family to have neurofibromatosis, commonly referred to as NF. As of now, NF has no cure.

“Right now for just NF, there is no treatment,” said Terha, Andrew’s mother. “There are things that can occur because of the disorder, like learning disabilities, physical abnormalities, tumors; it just kind of depends on what affects the body and what treatment—or Band-Aid—that they can use to help treat those symptoms.”

NF is a genetic disorder that creates tumors throughout the body. While relatively unknown, NF occurs in one in every 3,000 people, according to the Children’s Tumor Foundation.

Andrew’s grandfather, Craig Woolf, was the first in his family to have NF, as the result of a spontaneous genetic mutation. The gene, which has a 50 percent chance of being passed from parent to child, showed in Terha, who was diagnosed at two years old.

Terha first noticed it in Andrew, her oldest, while he was helping his grandmother wash dishes.

“I saw that his shoulders weren’t quite even—one was higher than the other, so I started making appointments,” she said.

Because of NF, Andrew has scoliosis with two extra vertebrae and one extra rib.

“When I run, because [my spine] is crooked, I don’t go as fast as I’m supposed to, so it kind of slows me down,” Andrew said.

He has yearly x-rays to monitor the scoliosis to make sure it does not evolve to the point of needing corrective surgery. Andrew and his two-year-old brother, Griffin, who also has NF, have annual checkups at Primary Children’s.

“We are pretty lucky with the severity that the children and myself have,” Terha said. “I have some friends whose children have amputated legs because of what it has done to their bones—it can cause them to bow or be fragile and fracture easily, so they can’t grow properly and have to be removed.”

While NF primarily revolves around the formation of tumors, it can bring a host of issues with it, often stemming directly from where the tumors have formed.

“It’s common to have coordination issues [and learning disabilities] when you have NF,” said Drew, Andrew’s father. “You also have to be careful because the tumors can grow in pretty much any nerve.”

Tumor growth on optic nerves can lead to blindness; growth in ears can cause hearing loss; and growth in the brain can lead to a host of other issues. While 90 percent of the tumors are benign, 10 percent do prove to be cancerous, causing an entirely new concern.

The tumor growth increases with age, particularly for women, as the growth is stimulated by hormones. In 2012, Terha had a 7-pound tumor removed from abdomen.

“They had to cut me from pretty much spine to spine all the way around to try to remove it,” she said.

In an effort to combat NF, Children’s Tumor Foundation raises money for NF clinics and clinical trials, trying to find a treatment for NF itself, not just the symptoms. Children’s Tumor Foundation puts on several fundraisers, including an annual NF walk held in locations all over the country.

“I wanted to raise money for the people who want to find a cure,” Andrew said. “That’s why I did my stand.”

Andrew’s soda stand started with just a few leftover sodas from a family event.

“It’s pretty impressive because it was totally his idea,” Drew said. “He asked if he could sell them and then donate the money at the annual NF walk. Totally on his own. That’s one of the things as a parent you just can’t say no to. We’re pretty proud of him.”

Andrew quickly expanded from soda to include popsicles, juice pouches and—best of all—homemade Rice Krispies Treats, spending nearly every Saturday from June to August in front of his grandmother’s house. Every penny he earned went straight to the Children’s Tumor Foundation.

Since his grandmother’s house was so close to the firehouse, firefighters were frequent customers.

“When the firefighters came back, they would usually stop by for popsicles and Rice Krispies Treats,” said 8-year-old Zoey, Andrew’s only sister. Zoey was a regular at the stand; in addition to occasionally buying something, she often helped her brother with supplies and manning the stand.

Firefighters weren’t the only regulars last year. Kelly Martin, the general manager at Fairwinds – Sand Creek Retirement Community, was on her way home with her husband when she saw Andrew’s stand.

“When she was going by, I smiled so big that she turned and came over and bought something,” Andrew recalled.

Kelly said she generally stops at roadside stands run by children, and Andrew’s was no exception.

“He just had this sign in all different colors and markers that he had done, and I honestly thought he was doing it for a school project or a badge or something,” Martin said. “He was just the cutest little redhead.”

After speaking with Andrew for a few minutes, she quickly learned why he was trying to raise money. It didn’t take long for her to decide this was a fight she could help with.

Fairwinds was in the process of a refresh, meaning it was starting over with new furnishings, and the old furnishings were going to be sold with the money generated to go to a charity of Martin’s choice.

“The night before I had told my husband that I wanted to find the perfect charity or family to do [the fundraiser] for,” Martin said. “I feel like the Lord was speaking to me and telling me, ‘Here’s your path; go meet this family.’”

Martin spoke with Drew, who was with Andrew when she had stopped by. She told Drew that she wanted them to be the family and cause that Fairwinds supported with its refresh.

“Her offer to help with fundraising was just amazing,” Drew said. “We’d never known who she was. She was just driving by, stopped and offered to help raise money for his cause. Pretty special. Pretty cool moment.”

The Fairwinds fundraiser went on from February to May. The refresh is expected to have raised $7,000 for Andrew’s family and, through them, the Children’s Tumor Foundation.

Andrew and his soda stand will be back on the corner of 8th Street and Flora Circle in 2017, continuing to fight to fund NF research.

He’d love it if you stopped by for a snack.