"Racing" to raise awareness for rare disorder

Local 9-year-old raising awareness for Hereditary Angioedema

STRASBURG, VA. - "People are like oh it's a girl I can beat them but they change their mind after they race me,” explained Luci Toman.    

9-year-old Luci Toman is an impressive slot car racer.

"I really like it, I don't cut anybody any slack," added Luci Toman, crinkling her nose.

This weekend she beat out over 150 cars in a slot car competition at Strasburg hobbies, taking first place -- but it wasn't the award that made this race so special

“Everybody was asking what’s going on why do you look different every time why do you have a PICC line (a catheter inserted into a large vein, used for long-term intravenous (IV) medications, nutrition etc.) stuff like that,” said Luci Toman.

“She came to us and she said mom and dad my friends are asking questions the guy at the race shop is asking questions and I need a way to tell everybody at one time,” said Luci’s mother, Jami Toman.  

In response, Luci asked to hold the race to raise awareness about her rare disorder

“It felt actually pretty good because I could explain it to them and I just said I have (type III) Hereditary Angioedema it makes me swell at any given time," explained Luci Toman, with confidence and poise beyond her years.  

“She’s always been an old soul,” Jami Toman explained, adding “I think for a reason.”

Luci took up the racing after she was diagnosed in June and could no longer play softball due to her PICC line, which she receives $15,000 worth of medication through every 3 days.

Thankfully, the family’s insurance “has been really good” in terms of covering expenses, but sports aren’t the only thing they’ve lost to the disorder.

"I’ve had to leave my job to take care of her, which is great, I love it. But her swells, one day she dropped to the floor, she had her book bag on, she had an abdominal swell."

Abdominal swells can be dangerous because it impacts internal organs. Whereas tongue and throat swelling is life threatening. Jami Toman added that head swelling can also be scary for Luci because she often “doesn’t know where she is.”

Despite the hardship Jami Toman says her daughter stays: "positive, she's never once asked why this is happening to her."

The family is considering hosting annual awareness events in hopes of sparking research efforts that will help Luci and others living with Hereditary Angioedema lead a better life.

Currently, Luci Toman reads to preschoolers in lieu of participating in gym class, due to medical constraints. Something that has prompted her to want to become a kindergarten teacher when she grows up.  

Hereditary Angioedema is a rare potentially disabling and life-threatening genetic disease. According to the U.S. Hereditary Angioedema Association’s website about 1 in 50,000 people have the disorder.  It is believed there are many people who are unaware they have the disease, as it is commonly misdiagnosed. 

Hereditary Angiodema is typically caused by malfunctioning or low-levels of a plasma protein called C1 inhibitor. 

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