Parents Honor Son's Spirit

A charity housing families of ill children is inspired by a baby who lived a day.
Sandy Cappelli remembers the day after her son, Steven, was born.The infant was clinging to life.

"I thought I would never get through the next couple of weeks," his mother recalled. "There was a lot of confusion. Then, when they brought him to me, it was suddenly peaceful. All of the family was there. My mom baptized him. We took pictures. I told him we love him. We spent a great full day with him.
"He died in my arms."

She has spent the last four years searching for meaning in Steven's 32-hour life. She says she found it. She found it in an organization she named Steven's Hope for Children.

It provides temporary homes to families of children undergoing outpatient treatment for transplants and other life-saving procedures at Loma Linda University Children's Hospital.It is a nonprofit organization that wouldn't exist, she said, if it weren't for Steven.

Sandy Cappelli, 40, and her husband, Tony, 46, had agonized over the fate of their unborn son for four months - ever since the Upland couple went to a doctor for a routine ultrasound test they hoped would tell them the sex of a fetus they called Steviebri (Steven for a boy, Brienna if it was a girl).
The doctor told them it was a boy. He also told them their son had a heart defect few babies survive. He had only half a heart. Other complications made a heart transplant impossible.

"We didn't believe it was God's plan to terminate the pregnancy even though that was the logical thing to do at that point," Sandy Cappelli said. "So we took the pregnancy on with plans of donating Steven's organs."

As it turned out, Steven was too small and did not live long enough to be an organ donor."That kind of left us searching," his mother said.
Steven's Hope for Children was Sandy Cappelli's idea, she said, "but Tony took it to a much bigger level." She had started a journal during the pregnancy, with plans to publish her thoughts in book form and donate the proceeds in Steven's name to charity. But what charity?

"Then we thought we would establish a foundation so we could control how the money was spent. Then I thought, `What about a nonprofit?' I brought it up to Tony and he really thought it was a good idea. Then I panicked. What if I couldn't get the book published. He said, `Don't worry about it.'"
"We're unique," Tony Cappelli said. "We both know the direction we're going, but sometimes we work at different speeds. I tend to be more the big-picture person. She tends to focus on the details. I come up with the marketing. She checks the spelling."

More Than a Year

It took them more than a year to complete the paperwork to establish their nonprofit organization. But the big problem, he said, was deciding what they would do with the money they were going to raise.

"We started asking questions," Tony Cappelli said. They formed focus groups. They talked to social workers.

"We knew we wanted to help families with children," Sandy Cappelli said. "We wanted to find out what our niche would be. It kind of brought us to this extended-stay treatment."

What they learned, Tony Cappelli said, was that children who undergo cancer treatment and organ transplants often require months of follow-up treatment. Because of their delicate condition, hospitals often require them to stay within half an hour's drive, sometimes less.

"Ronald McDonald House - and they're a great organization - provides in-patient family housing, usually up to 30 days," he said.

"We thought maybe we could do something with extended stays for the families that literally have to relocate for anywhere from two months to six months," Sandy Cappelli said. "We wanted an atmosphere that wasn't communal; a place where a family can still be a family."

Open Doors

In May 2003, nine months after they accepted their first contribution, the Cappellis opened their first two-bedroom quarters in the Rosewood Apartments on Redlands Boulevard in Loma Linda. The apartment complex gave them a 10 percent break on the rent.

"At the time, we didn't know where we were going to get enough money to keep it open," Tony Cappelli said. "We just did it. It slowly built and slowly built."

A home-decorating company furnished the apartment for free, turning such discards as cooking pot lids into decorations. The Cappellis organized golf tournaments, a ball and motorcycle poker runs. They asked community groups for help.

"We had some fears at first," he said, "but I figured if we could help one family for one day, that's more than most people are doing."

Adding On

Three months ago, they opened a second apartment in the Rosewood complex.

"It's a nice place," said Kayla Villela, a 14-year-old Upland girl whose mother and three siblings are staying with her there while she undergoes post-bone marrow transplant treatment. "Everything here is good."

The Cappellis have shared their personal story with Kayla's family, but leave the formal counseling to social workers.

Kayla's mother, Mona Guadarrama, 36, who gave up her janitorial business to tend to her daughter's medical needs, pays $10 a night. She said she hopes to help the Cappellis raise more money. The middle school her daughter attended has also agreed to help.

"The way things are going," Tony Cappelli said, "we'll get our third apartment in June or July."

Increasing Budget

Their annual budget is now $130,000, up 50 percent from a year ago, he said. It figures to get dramatically bigger about a year from now when he hopes to start construction on a permanent building that would house six to 10 families. Tony Cappelli said he's "not afraid to ask for money" and expects to step up fund-raising efforts.

"We're still looking to find a piece of land," he said. The Cappellis see Steven's Hope houses near hospitals from San Diego to San Francisco.
"After Steven died, I was left wondering, `What was it about?' " Sandy Cappelli said. "This is the total product of me searching for answers. This is what it was about."
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STEVEN'S HOPE
Hospital social workers help Steven's Hope for Children place families in apartments.
Headuqarters: 1014 W. Foothill Blvd., Suite B, Upland, CA 91786
Quatsions or contributions: (866) 378-3836
On the Web: www.stevenshope.org