Barnhart Parents Reach Out Globally, Form Nonprofit to Help Their Son

Parents will do anything and make great sacrifices to support and protect their children.

For a couple in Barnhart, that meant creating a new organization, forming an alliance with the University of Iowa and donating the mother’s kidney to their son.

Nathan Biermann, who is now 11 years old and lives happily with his six siblings, was diagnosed with Atypical Hemolytic-uremic syndrome (Atypical HUS) when he was 11 months old, his parents Bill and Cheryl said during a phone interview.

Atypical HUS is a disease that primarily affects kidney function, says the U.S. National Institues of Health website. This condition can occur at any age and causes abnormal blood clots to form in small blood vessels in the kidneys.These clots can cause serious medical problems if they restrict or block blood flow.

HUS, in contrast, is a disorder where an infection in the digestive tract produces toxins that damage red blood cells and kidneys, states PubMed, the U.S. National Library of Medicine's managed website.

Nathan’s first symptom was a fever when he was 11 months old.

“The family had a stomach virus, and somehow Nathan avoided it for two weeks,” Cheryl said.

Their pediatrician advised them to treat the fever with a children’s medication.

One morning, Nathan woke up, seemed lethargic, pale colored and very weak, Cheryl said.

She and her husband took their son SSM Cardinal Glennon Children’s Medical Center in St. Louis for a professional opinion.

The medical staff said Nathan’s blood had clotted, and they could not draw the needed blood sample.

Doctors diagnosed Nathan as having Atypical HUS, Cheryl said. Nathan's kidney functions gradually deteriorated.

“You’re shocked initially, but as parents you want to do something. You want to know what can you do to make things better,” Bill said.

Nathan was in the hospital for six weeks and received twice-daily transfusions of plasma, the liquid portion of blood after the red blood cells have been removed.

The medical staff sent Nathan home with the requirement for daily transfusions, Cheryl said. Nathan eventually needed a feeding tube, developed sleep apnea and occasionally suffered from seizures.

Nathan went on dialysis after losing the use of his kidneys when he was 5-years-old.

“Dialysis was helpful the first year but was less effective the second year,” Cheryl said about the 10-hour treatments needed to remove toxins from Nathan’s blood.

Eventually, the Barnhart parents allowed doctors to place Nathan on a treatment that removed toxins at a faster rate. The problems were that Nathan was prone to seizures due to a loss of electrolytes, and his energy levels would dramatically surge after the toxins were removed.

In 2002, while Nathan was undergoing treatments, Bill Biermann founded the nonprofit organization The Foundation for Children with Atypical HUS to find a solution for his son and all children.

The foundation is an all-volunteer group focused on helping other parents who discover their child as Atypical HUS.

Read Part 2 on Friday to learn how the non-profit collected information overseas to provide hope to parents worldwide. 

Clarification/Correction: Additional information was added to explain Atypical HUS in contrast to HUS. Nathan is 11 years old. The writer and editors erred.