Monday Spotlight: Race to raise awareness
STRASBURG – An 8-year-old girl with a rare blood disorder will hold a slot car race April 22 to raise awareness of her lifelong condition.
Luci Toman, 8, of Strasburg, was diagnosed with hereditary angioedema last June. Luci has type 3, which is the rarest. There is a blood test to find type 1 and 2, but not for type 3.
Her mother, Jami Toman, said the process for testing was “long and painful” for Luci. The disorder affects everyone differently, which makes diagnosis difficult. Testing includes reviewing medical histories of the family, taking pictures, and painful abdominal tests. Through the medical history they discovered that Luci’s great-great grandmother, with the same name, may have had the disorder as well.
“It can take up to two years for a diagnosis,” she added.
Luci, a third grader at Sandy Hook Elementary School, added that people with the disorder have a defect in the gene that controls a blood protein called C1 inhibitor, which results in production of either inadequate or non-functioning C1 inhibitor protein. Because it’s not there, it’s misfiring or it’s low. For her, it’s misfiring.
“Anything in my body can swell at any given time,” she said.
According to the hereditary angiodema website at http://tiny.cc/i2diky, the disease is a rare and potentially life-threatening genetic condition that occurs in about 1 in 10,000 to 1 in 50,000 people.
Symptoms of the disorder include episodes of swelling in various body parts, including hands, feet, face, tongue and throat.
“Everyday is different,” Toman said.
Because of her condition, Luci cannot participate in physical education classes at school, so she reads to preschool kids instead, leading her to want to become an elementary school teacher when she grows up.
Luci receives an infusion of Berinert at home every three days through a PICC line, which is a thin, long catheter that is inserted into a vein that keeps the swelling attacks to a minimal, Toman said. This medicine is used for maintenance as well as emergencies. This is also the only medication right now approved for children for this disorder.
The cost for Luci’s medication is $15,000 every three days, Toman added. The pricing is based on the dosage, so the price can go up if Luci’s dosage continues to climb.
Because of the rarity of the disorder, not many doctors have heard of the disease or know what signs to look out for. Symptoms are often misdiagnosed as an allergic reaction, she added.
Triggers for Luci’s swelling are becoming too excited and nervous, which make holiday and birthday celebrations difficult for the family, often requiring extra medication.
Even with all the medications and swelling attacks, she has remained positive and still acts like a regular kid with a bubbly personality.
“She’s never once asked ‘Why me?'” Toman added.
Luci said the idea to put the race together was her idea to inform people about what she goes through on a daily basis with her disorder.
The race will be held April 22 inside Strasburg Hobbies with people encouraged to bring their own slot cars to race. One car was hand-painted with the name of her disorder written on it.
Luci said hobby shops from around Virginia, Maryland and Pennsylvania will be supporting her efforts by stopping by the race.
“I love slot car racing,” she said. “I think it’s pretty cool.”
Those at Strasburg Hobbies have been very supportive of her cause and have become “my little race family,” she added.
Luci has been racing slot cars for about a year and said she got the idea in December to use a race to inform the community about her disorder and began planning the race.
Contact staff writer Kaley Toy at 540-465-5137 ext. 176, or firstname.lastname@example.org