"We can’t make any promises to Sophie about what her future holds, but we can make sure she is surrounded by love and then we’ll face everything else as it comes," Shanna Nelson tells PEOPLE

By Michelle Boudin
March 29, 2018 01:54 PM
Credit: Courtesy of the Nelson family

When Caleb and Liam Nelson were just 5 and 3 years old, the brothers wanted to do something to help their 2-year-old sister, Sophie. They knew she had something wrong with her that meant she had to see a lot of doctors, so they worked with their parents to start a lemonade stand to raise money to help find a cure for her condition.

“We scrambled to throw it together,” says their dad, David Nelson, 37. “But we didn’t have any lemonade. We did have sweet tea though, and that’s Sophie’s favorite, so we did a sweet tea stand.”

The family made $125 from that first sweet tea stand that was set up on their front lawn in Mint Hill, North Carolina, in 2016.

“Sophie has NF,” Caleb tells PEOPLE. “We try to raise money so that doctors can try to figure out how to make a medicine to cure kids with NF.”

Sophie, now 5, was diagnosed with neurofibromatosis (or NF) when she was just a 2 years old. The genetic disease causes tumors to grow all over the body – inside and out. Sophie Nelson looks like most other girls her age, but if you look closely, you’ll see she has more than 20 birthmarks all over her face and body.

Sophie in the hospital after an MRI scan
| Credit: Courtesy of the Nelson family

Sophie’s pediatrician initially thought the birthmarks were tumors. Now they know they’re birthmarks and they’re continuing to monitor Sophie for tumors.

Shanna Nelson, 37, remembers the day she and her husband got the devastating news.

“We knew nothing about anything and we cried for two days,” she says. “All we had was this black and white the pamphlet with a little bit of information so we Googled it.”

They learned that Sophie can basically develop a tumor anywhere there is a nerve ending — and some of the tumors can be dangerous, even potentially deadly.

For now, Sophie’s parents consider themselves lucky. “She’s only 5 so we don’t really know what it will mean,” says David. “Right now there are things that can make her life a little difficult but nothing super scary. The tumors are generally not cancerous, but they can be. We have friends with NF kids who didn’t make it to 10.”

Right now, the family is focused on awareness and they’ve found a fun way to get all three of their kids and other families across the country involved.

It started when Caleb came home from school with the Guinness World Records book as his reading assignment when he was in the first grade.

Credit: Courtesy of the Nelson family

“He said ‘Sweet Tea for Sophie’ should have a word record,” David recalls. “And what else can we say but sure?”

That first year, friends and family hosted 40 stands in seven states raising $7,000. But they didn’t set a record.

“It took Guinness a year to get back to us and it turns out they’re really not interested in this type of world record,” David says while laughing.

It no longer matters, the family says they found a much more important goal.

“Our goal now is to have a sweet tea stand in every zip code I think we have about 43,000 to go and that’s the fun of it. As we fill in the map, that means that awareness about NF is spreading across the country – that’s the new mission,” David tells PEOPLE.

The Nelson family
| Credit: Courtesy of the Nelson family

In the two years since they started, they’ve raised more than $16,000 from neighborhood sweet tea stands with all the money going to the Children’s Tumor Foundation. This May 19, they’re once again asking people across the country to host “Sweet Tea for Sophie” stands.

Caleb says, “Sweet Tea for Sophie is really important to us because it helps our sister. We want our sister to be healed and we don’t want her to have NF anymore…we love her.”

Adds Shanna, “We can’t make any promises to Sophie about what her future holds, but we can make sure she is surrounded by love and then we’ll face everything else as it comes.”