Strasburg girl lives full, active life with rare disease

Sandy Hook Elementary School fourth grade student Luci Toman, left, and her classmate, Bryana Hansell, 9, prepare to shoot balls during gym class at Sandy Hook Elementary School in Strasburg recently. Luci has a rare disease called hereditary angioedema. Rich Cooley/Daily

STRASBURG – Many afternoons after school, Luci Toman, a fourth grader at Sandy Hook Elementary, is spotted at Strasburg Hobbies on King Street, playing with her friends and her ever-growing collection of slot cars.

The 9-year-old loves Virginia history, math and reading, depending on the book. She enjoys playing with her little brother and simply being outdoors. On the outside, Luci may look like every other child her own age but on the inside she’s a rarity.

“It’s not an everyday disease,” Luci said, “Doctors don’t really believe in it. It’s a made up thing to most people. But it’s a real illness.”

When Luci was 3 or 4 years old, she starting showing symptoms of the hereditary angioedema or HAE: a medical disorder that causes episodes of swelling throughout the body.

Luci’s mom Jami Toman said the disease is rare and shows up in “Y0NH2b CLPzrc”>1 in 10,000 to 1 in 50,000 people in the world. “And my daughter was one of them,” she said.

At first the doctors weren’t sure what they were dealing with.

“She had surgery after surgery,” Jami Toman said. “Every one you can think of that a child shouldn’t have to have, she’s had.”

The most discouraging thing of all was the fact that Luci’s medical tests kept coming back normal with no signs of disease or an illness.

“They changed her diet because they thought she had a food allergy,” Jami Toman said. “She was practically eating nothing but lettuce and chicken for a year.”

For more than half of her life all Luci has known is the inside of doctor’s offices and emergency rooms.

“I wasn’t allowed to be a kid,” Luci said. “I missed out on P.E., swimming and even basic things like taking a shower. It wasn’t fair.”

One day Luci had a body swell that sent her to the hospital in Harrisonburg, where a medication was prescribed.

“We crossed our fingers because if you didn’t have the disease, the medication wouldn’t work,” Jami Toman said. “But it did. For the first time in years we had our child back.”

Luci calls her medication her “joy juice.”

“I’m pretty much able to do anything I want now,” Luci said. “Because, before this medication, I had a picc line. I was lucky if I was able to walk around a store without someone pointing and making fun of me.”

Her fear was her picc line – a catheter inserted into the leg or neck providing medications  – would get pulled out, so she stayed away from crowds. Until now.

After her stay and recovery in Harrisonburg, Luci did something Jami Toman said her daughter hadn’t done in years.

“As soon as we got home she went and played,” she said. “At like 3 a.m. But we didn’t care because our Luci was back.”

Through lots of documentation like family history, pictures and constant tests, Luci was diagnosed with HAE.

“A lot has changed since my diagnosis,” Luci said. “My picc line is out. I can give myself my own medicine. I’m more active. I can do P.E. again. Basically I’m an independent kid now.”

Emphasis on independent, her mother added.

“She looks and acts like a normal kid but there is something going on under her skin,” Jami Toman said. “And she’s not the only one.”

“The swells hurt,” Luci said. “I can’t always describe them. But I know when one is about to start because the area begins to tingle. And I feel like I might explode.”

HAE causes parts of the body such as the brain, tongue, stomach walls and intestines to swell with fluid. What causes this is still unknown. But even the smallest injury can cause Luci to have a body swell.

“We have to take her word for it because we can’t always see her swells,” Jami Toman said. “Some are more obvious than others.”

Holidays are difficult in the Toman house because Luci’s body swells are triggered by excitement and nervousness, along with salt and soy.

“Everyone’s triggers are different,” Jami Toman said. “It really depends on the individual.”

The older Luci gets, the more she’ll be able to control her body swells.

“As long as I stay away from those things, I’m good,” Luci said. “I was able to knock an item off my bucket list: swimming.”

That’s right. At 9 years- old, Luci has a bucket list. Why? Because they don’t know from day to day, Jami Toman said.

“My scariest moment of the day is when I go to Luci’s room first thing in the morning,” she said. “I don’t know if I’m going to walk in and see my daughter alive or not.”

She added that she knows a lot of children die in their sleep because their throat closes and they can’t breathe.

“So we live each day like it’s our last,” she said.

“I’m afraid that I won’t get to see my family again,” Luci said. ” Or I won’t be able to play anymore or see my friends.”

But most importantly, Luci said she would miss slot car racing.

“Priorities,” Luci added, laughing.

“She is one of the most resilient kids you’ll ever meet,” Jami Toman said. “When she has an attack, we tell her she can stay home from school. But she says ‘no.’ Puts a smile on her face. And goes.”

“Sometimes I’m bullied at school because I look different,” Luci said. “But I don’t let that stop me because I love school.”

Luci said her fellow classmates pay close attention to her, which she said is a blessing in itself.

“One day I was sitting in class and I didn’t realize my forehand was swelling because I was concentrating on my class work,” Luci said. “But my classmates started getting the teachers attention and I went to the school nurse.”

“It’s nice to know they [her classmates]  have my back,” Luci added.

“Most kids her age couldn’t handle what Luci has been through,” Jami Toman said. “She’s mature. She’s an old soul.”

Luci is an advocate for HAE and likes educating the community. This summer she will travel with other HAE advocates to Capitol Hill where she will raise awareness. She is also having her wish granted through Make-A-Wish by meeting American auto racer Leah Pritchett. “Her idol.”

“Not every illness is in a wheelchair,” Jami Toman said. “We need to get away from that stereotype.”

“I appreciate the little things more now than I did,” Luci said. “Like beating up my brother or going for a swim.”