Family of Grace

Pete and Suzanne Letherman honor daughter's memory by helping others with sick children

Published: Friday, March 10, 2006 -- The Truth, A1
Last updated: 3/9/2006 11:56:29 PM

By Jason McFarleyTruth Staff

ELKHART -- Grace Letherman never had soccer games or school plays for her parents to swap stories about with friends.

Instead, Pete and Suzanne Letherman's memories of their daughter -- Sweet Pea, they called her -- are built around fleeting moments spent mostly at hospitals and, in the end, at home.

They don't mind talking about the days they shared before the 6-month-old succumbed to a rare genetic disorder that deteriorated her muscles. The time was brief, to be sure, but long enough to inspire charity from the family's tragedy.

Shortly after Grace's death in May 2003, her parents began the Sweet Pea Foundation, a nod to her nickname born one day at a children's hospital. The growing nonprofit foundation is their way, they say, of remembering Grace and helping other families with sick children.

"I still think about her every day," says Pete Letherman, an Elkhart real estate professional. He is sitting in his office, where Grace looks out from a photo in a silver frame beside his desk.

"My life continues to change as a result of it (her death)," he says. "The foundation is a way for me to remember her and to get to talk about her."

The foundation supports organizations that give toys, games and other gifts to patients at children's hospitals in Indianapolis and Chicago. It also raises money for the Ronald McDonald House charities that provide free overnight lodging for families of young patients.

To date, the foundation has given away more than 2,000 toys and raised nearly enough money to perpetually support a room supplied by Ronald McDonald House of Indiana.

Its main work has been at Riley Hospital for Children in Indianapolis and Chicago Children's Memorial Hospital, both places where Grace was treated for the spinal muscular atrophy disorder that killed her. Suzanne Letherman says the foundation is just starting to make inroads into hospitals closer to home.

She dropped off snacks, toys and other supplies this week to Elkhart General Hospital and Memorial Hospital in South Bend.

"We're still small so that not a lot of people know about us," she says in a hallway outside her husband's office. She is holding the couple's 16-month-old son, Andrew, who was spared Grace's genetic fate. The Lethermans are expecting another child in June.

"People who do know about us," she says, "are confident in us and in what we're trying to do."

Kathy Johann is among them. She was the Letherman's social worker when Grace was at the Indianapolis hospital.

Johann recalls the foundation giving the hospital such items as baby swings and aquariums. The gifts serve a twofold need: They provide welcome distraction from illnesses the children face, and they help the youngest patients with development of neurological and motor skills.

"Periodically, they just call and ask us what we need," Johann, who works in the neonatal intensive care unit, says in a recent phone interview. "It helps because things can run tight here sometimes."

The foundation itself raises money through annual golf outings and twice-yearly mailings that coincide roughly with Grace's November birthdate and the anniversary of her death. A popular fundraiser, the Blarney Bash, is timed around St. Patrick's Day each year.

The foundation also collects pop can tabs for Ronald McDonald House.

The Lethermans, who essentially run the charity out of their Elkhart-area home, say they pay out of pocket for overhead costs such as mailing and printing. All donations strictly benefit the foundation's gift purchases and support of other charities.

"We're trying to do our small part, and we know there are many organizations out there doing wonderful things," Pete Letherman says. "We're hoping to fill a void where we have some personal experience."

Johann marvels at the family's good grace.

"They really took something very sad and turned it into something joyous," she says. "Now Grace really lives on."

Contact Jason A. McFarley at jmcfarley@etruth.com.