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Pulling for Delaney
Community of family friends, supporters plan fund-raiser for 3-year-old with epilepsy

By Aldrich Tan/Staff writer

July 8, 2005

Bailey Phelps likes to play outside with her little sister Delaney.

But Delaney, 3, can't stay outside for too long.

She has a severe form of epilepsy triggered by sunlight, fluorescent lights, heat and changes in body temperature.

"We're out playing with our two dogs or passing the ball to each other in the back yard and then Delaney's eyes suddenly get really big," said Bailey Phelps, 9. "Soon, my mom tells us that [we have] to go inside. It stinks."

Her pediatrician, Dr. Niazi Sidhom, said her seizures can range from light eye flickering to full-body convulsions. She has thousands of seizures per day.

Family friends and local businesses are planning to build a 300- to 350-foot indoor playground at the Phelps residence so that Delaney and her brother and two sisters can play together.

The Phelps family has lost one member to complications of epilepsy. Caitlin Phelps developed seizures when she was 51¤2 months old and died in 2002, four years later.

Delaney Phelps developed seizures in October 2002, when she, too, was 5 1/2 months old, her mother said.

Once a week, Delaney will have a grand seizure that will lead her to stop breathing. Delaney's sister Ashlyn, 12, is trained to put an oxygen mask on her sister to help her breathe. A digital clip on Delaney's toe tracks her heart rate and oxygen level.

She takes anti-seizure medications with little effect, so Delaney is going through another anti-seizure therapy called vagal nerve stimulation, her mother said.

In early March, doctors at Valley Children's Hospital installed an electrode wrapped around the vagus nerve located in Delaney's neck. The electrode is connected to a generator implanted in her left chest wall. When someone swipes a magnet across the generator, it turns the stimulator on and sends electrical messages to help stave off a prolonged seizure.

"We use that procedure multiple times a day when she is having seizures in a row," mother Renee Phelps said.

She adds that Delaney is undergoing craniosacral therapy, which uses light touching to assure that the spinal fluid flows in the right direction. The treatment costs $100 and isn't covered by insurance.

A neurology team at the Minnesota Epilepsy Center in St. Paul, Minn., is currently reviewing Delaney's records. Sidhom hopes that surgery will either lower or eliminate Delaney's seizures, but it could cost more than $100,000.

The Phelps family will find out if Delaney is a candidate for surgery next

See Delaney/5A

How to help

What: Fund-raiser for the Phelps' indoor playground and Delaney's medical expenses - dinner and silent auction

When: July 15. Auction starts at 6 p.m. and dinner at 7 p.m.

Where: Lamp Liter Inn, 3300 W. Mineral King Ave., Visalia

Tickets: $30 each

Information: 280-8710

"I have a lot of fun outside throwing balls and playing with our dogs, then I see Delaney looking from the window feeling miserable."

- Bailey Phelps, 9

whose sister Delaney has a severe form of epilepsy