A benefit will be held at the Youth & Ag Building in Lancaster for the family of a boy diagnosed at 6½ months old with a fatal disease.
Bryce Thomas Heckendorf, son of Kyle and Jenna Heckendorf, has Krabbe Disease, a genetic disorder. The average lifespan of someone with the early infantile form of Krabbe Disease is 13 months. The disease has no treatment once symptoms begin, and there is no cure.
Jamie Martin, Bryce’s uncle, said symptoms started developing when Bryce was 5½ months old, after his birth in May.
“He was struggling to lift his arms and bring his hands together; he stopped grasping at toys and holding his bottle on his own; his neck strength seemed to be decreasing,” said Martin.
Bryce was diagnosed at the UW American Family Children’s Hospital in Madison.
Krabbe Disease is the result of a genetic mutation passed on by both parents. About 1 in 125 people are carriers. People with Krabbe Disease don’t produce a key enzyme that affects the growth and maintenance of myelin, which protects nerve endings. The lack of GALC results in demyelination and an excess of globoid cells, which are toxic. As these cells build up, children slowly lose their motor functions, have seizures and muscle spasms, and go blind and deaf before dying.
While there are no treatments available once Krabbe symptoms start, there are options if it’s detected in utero or during newborn screenings, including cord blood/stem cell or bone marrow transplants.
Only four states, not including Wisconsin, include Krabbe Disease in newborn medical tests.
“Had we learned of this genetic mutation in Bryce shortly after his birth, one of these treatments may have been considered,” said Martin.
The Sky Is Blue benefit will be held at the Youth & Ag Building in Lancaster Saturday, March 1 from 3 to 8 p.m. The benefit will raise money 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 disorder. The benefit will include a hog roast, with tickets $15 for adults and $5 for children, a kids’ carnival for $5 per child, a silent auction from 3 to 6 p.m., a live auction at 6 p.m., and a bean bag tournament.
For more about Bryce’s story or to support the B.Strong Fund, go to www.thebstrongfund.org.