|2/6/2014 4:59:00 PM|
Benefit to be held for local baby with Krabbe Disease
Bryce Thomas Heckendorf was born on May 6, 2013, a healthy, thriving baby boy. He hit key milestones and was developing on track. But in mid-October, his parents, Kyle and Jenna Heckendorf of Dodgeville, began to notice some dramatic changes in their baby boy.
Bryce was struggling to lift his arms and bring his hands together. He was not interested in swatting at toys hanging from his activity center or reaching for favorite toys. When he began showing signs of stiffness, his parents took him to a hospital.
Bryce was diagnosed with Krabbe Disease at the American Family Children's Hospital at the University of Wisconsin in November. His neurologist and geneticist had only known of the disease, never having cared or diagnosed a child with Krabbe before.
Krabbe Disease is a rare and incurable genetic disorder, the result of a genetic mutation passed on by both parents. Individuals with this disease do not produce a key enzyme known as galactospylceramidase (GALC). One in every 125 people in the United States is a carrier of Krabbe.
The odds of having a baby with Krabbe is one in 100,000. While there are no treatments available, once symptoms of Krabbe are present, there are options if it is detected in utero or during newborn screenings.
Newborn screening standards vary by state, with currently only four states that include Krabbe Disease in their screening panels. These states are New York, Missouri, New Jersey and Illinois.
Family and friends of the Heckendorf family will gather together at the Youth and Ag Building at the Grant County Fairgrounds in Lancaster on Saturday, March 1 to raise proceeds to help care for Bryce during his terminal illness, to fund the fight for the inclusion of Krabbe Disease in newborn screenings on a national level and to fund research and raise awareness about the disease.
From 3:00 p.m. to 8:00 p.m. on Saturday, activities such as a hog roast, silent auction, live auction, kids carnival and bean bag tournament will be held.
For more information on Krabbe, Bryce and the benefit, please visit thebstrongfund.org or keep up with the event on Facebook, "The Sky is Blue" Benefit for Bryce.
Article Comment Submission Form