Lincoln fifth-grader battling rare and life-threatening disorder
By all accounts 11–year–old Mya Blomenberg is a normal child.
Coloring, playing with her dog, or riding around the house on a hoverboard, you'd never guess the Lincoln fifth-grader is battling a life–threatening disorder.
“You may think I'm just a really strong, simple child but I'm truly not. You can't just define people by their looks,” Mya said.
At less than a year old Mya was diagnosed with OTC Deficiency.
It's a Urea Cycle Disorder that leaves her body unable to process protein.
"When your body processes protein nitrogen is released and nitrogen turns into ammonia, but for a healthy person it's all filtered through the liver, but Mya has a defect in the liver so hers is unable to filter it," Amy Blomenberg, Mya's mom, said.
The disorder affects less than 200,000 people in the U.S. and there’s no other known cases in Nebraska.
OTC Deficiency forces Mya to have specialized diet of high carb, high calorie, but low protein.
Eating too much protein causes ammonia to build up in her blood, which can lead to coma, brain damage, or death.
In 11 years Mya has been hospitalized 26 times for high ammonia levels and had one coma.
"We fought so hard to get her to stay alive that it's been of our other missions to let her live," Amy said.
Despite the difficulties of the disease Mya’s parents are determined to let her have a normal childhood.
In between the doctor visits and medication Mya participates in sports and hangs out with friends like any other 11-year-old.
While OTC Deficiency is rare, Mya is using it as a platform to educate others, "Although it is difficult I get to meet new people and teach them and I just have an awesome platform which I'm very thankful for."
The fifth-grader is battling the disorder with grace and positivity and proving that some of the mightiest warriors come in small packages.