Four sons benefit from Dance Marathon

Tracy Tucker

This is the second article in a three-part series showcasing the families who benefit from the 15-hour Dance Marathon.

Jim and Donna Brown have four boys who were diagnosed with phenylketonuria at birth.

The Browns, who live in Churdan, are looking forward to the fun of their second Dance Marathon at Iowa State on Saturday – not to mention the help they receive from the organization.

The Brown children, 5-year-old Colin, 7-year-old Trevor, 11-year-old Jacob and 12-year-old Brandon, are four of the 50 children in Iowa diagnosed with phenylketonuria, an inherited error of metabolism caused by a deficiency in the enzyme phenylalanine hydroxylase, said Jim Brown.

Loss of this enzyme results in mental retardation, organ damage, unusual posture and can, in cases of maternal phenylketonuria, severely compromise pregnancy, according to the National Center for Biotechnology Information Web site,

This lifelong disorder is a recessive gene both parents must carry, he said. There is a 1 in 4 chance of having a child with phenylketonuria if both parents are carriers, and the Browns have gone against the norm.

Because of a state-regulated newborn screening process, all newborns are tested for this disease, among others, Brown said.

“Our family would be totally different had our boys been born 30 years ago” when testing wasn’t used, he said.

Phenylketonuria is the inability to break down an amino acid in protein. The boys are on a regulated diet to monitor their intake of the protein they can’t break down, Brown said.

The boys have to test their blood through finger pricks every week to monitor the disease, he said. Currently, there is research being done looking into long-term effects and possible treatments for phenylketonuria.

Through Dance Marathon, the Brown boys are given a chance to lead somewhat normal lives for a day, Brown said. For someone who has lived with a disease, just one day of normalcy is very special.

The number dancers “is impressive,” Brown said.

“The amount of enthusiasm [the college students] show for the cause and the time they spend playing with the children is great to watch, and the boys get really fired up with all of the attention they get that day.”

Although phenylketonuria is a common disease among children who attend Dance Marathon at Iowa State, there are many children with varying illnesses, said Emily Smith, Dance Marathon biographer.

From hemophiliacs to leukemia patients and car accident victims, Iowa State’s Dance Marathon is open to families facing a variety of medical needs, unlike the University of Iowa, which helps only cancer patients and their families, said Smith, junior in psychology.

“Seeing all the students giving up their time trying to dance for 15 hours is pretty amazing, knowing they are fighting for the kids,” Smith said.