Sculptor Jeffrey Breslow exhibits new works

An evening to benefit the University of Chicago Comer Children's Hospital

August 21, 2006

Artist Jeffrey Breslow, president of Big Monster Toys, will unveil 16 bronze and wood sculptures at the Harold Washington Public Library, Sept. 9. Breslow's signature sculpture--up for a benefit auction that night--is Riley Johnson, a toddler with Chiari malformation and pseudotumor cerebri.

Chiari malformation is a structural abnormality in the cerebellum. The cerebellum extends from the skull, places pressure on both the brain and spine, and impedes the flow of cerebrospinal fluid. Pseudotumor cerebri, high intracranial pressure, sometimes accompanies Chiari.

To an acquaintance, Riley appears to be a healthy, energetic, 2-and-a-half-year-old boy. His nickname is Smiley Riley. Like many his age, Riley runs as soon as he's out of his stroller. In order to sculpt an image of him, Breslow had to take a series of photographs.
"Riley never stops," his mother Rachel Johnson said with a laugh. "We believe that's why he's so thin. He takes off. It's like Forrest Gump."

But his activity level is deceiving. He runs because it's easier than walking, Johnson explained. "He only runs. He doesn't walk because he can't control himself."

The boy already has undergone four surgeries to relieve pressure that causes excruciating headaches. His mom likened his condition to having a 10-pound brain in a skull that houses a nine-pound brain. Riley's mom, his grandmother and his 5-year-old brother also suffer from Chiari but much milder cases. They realized the cause of their life-long headaches after Riley was diagnosed.

"We're a three-generational Chiari family," his mother said.

Riley's parents first noticed something awry when he was 2 months old. He couldn't move his head, which eventually led to plagiocephaly, flattening of the skull. With time, physical therapy and a band helmet helped strengthen his muscles and reshape his head.

All seemed on the right path until Riley became more mobile. When he was 16 months old, they began to notice he crossed his eyes and had difficulty walking. After a series of doctor's appointments and an MRI, Riley was diagnosed with Chiari malformation. As Riley grew, the symptoms worsened.

"He would scream for hours, reaching for the back of his head, and his eyes were almost always crossed," Riley's father Kurt Johnson said. "He rarely slept through the night. Our search for someone who was experienced with Chiari in children brought us to Dr. David Frim and the University of Chicago Comer Children's Hospital."

Since then, Riley has undergone one brain surgery and three procedures related to a shunt that drains excess spinal fluid.

"He has high pressure due to too much spinal fluid," Rachel Johnson said. "It's like shaking up a pop bottle. It has nowhere to go."

Since Riley can't express himself verbally, they use the crossing of his eyes as a gauge. The worse the pressure gets, the more his eyes cross.

"Riley's in uncharted territory," his mom said. "There's no cure. They try to alleviate the symptoms."

Rachel is thankful for the relief and the opportunity to help the hospital. "We want to give back to the hospital that has given us so much. And we're grateful for the efforts of Jeffrey and his wife to raise funds to help Comer Children's Hospital."

Riley Johnson will be cast in a series of nine with the first edition being donated by Breslow and permanently installed in Comer Children's Hospital. In addition, half the proceeds from the art exhibit, Forms from Nature, will go to the hospital. The exhibit opens Sept. 9 with a cocktail reception from 6 p.m. to 8 p.m. in the Winter Garden on the 9th floor of the Harold Washington Library.

The library is located at 401 S. Plymouth Ct. The event is free and open to the public. To RSVP, the public should call Robin Siligmueller at (773) 702-2721.