When their 12-year-old daughter Sarah Grace lost her battle with Acute Lymphoblastic Leukemia (ALL) in November 2002, the Weipperts of Hicksville were beside themselves with grief. But Marissa and Matt, along with their son, James, needed to do something in memory of the beautiful, fun-loving girl who, throughout her illness, was always smiling and never complained.

Currently, childhood cancer is the leading cause of death by disease among US children under age 15. Each school day, 46 children or two entire classrooms of children are diagnosed with cancer. In Sarah's case, she was diagnosed with ALL in February 2002, just prior to her 12th birthday. Although she was considered high risk due to her age, gender and extraordinary high white blood count, statistics were in her favor that after two to five years of treatment and a recovery period, she would be cured. In the months following the diagnosis, Sarah underwent intense rounds of chemotherapy, but never went into remission.

As a result, Sarah required a higher dose of chemotherapy, cranial and full body irradiation and a bone marrow transplant. Her brother James, then 10, was a perfect match and donated a liter of marrow. According to the Weipperts, Sarah rallied after the transplant and regained some of her strength, but six weeks after the transplant, her leukemia was more aggressive than it had been originally. Sarah was admitted into the hospital just prior to Halloween 2002 and returned home in time to go trick or treating with her brother. But less than two weeks later, she lapsed again and lost her battle.

"I remember telling her that she was very brave and how proud of her we were," said Marissa.

In the months following their daughter's death, the Weipperts considered different ideas for doing something in Sarah's memory, but it wasn't until Sarah's birthday approached in March 2003, that a decision was made. "We could stick our head in the sand and just let the world pass us by or we could try to do something that takes the whole negative experience, all the bads, and flips it into something positive and gives us a new purpose," Matt said. "Even now, it's very difficult. It's a challenge to get up in the morning. A piece is missing from that neat little puzzle we had. All the pieces blew apart. They will never go back together, but we have to try to fit them in a way that works."

Marissa added, "I was always a firm believer that when it's your time, it's your time. But I have a very difficult time grasping the concept of a child dying. Part of our mission is to make people more aware of childhood cancer because it's amazing how many kids out their have childhood cancer."

Last year, the Weipperts established the Sarah Grace Foundation for Children with Cancer, Inc. According to the Weipperts, the foundation is a not-for-profit corporation dedicated to improving the quality of life of children with cancer and to provide comfort and support to families of children suffering from cancer.

"We experienced firsthand the devastating impact of this disease and the psychological and financial burden it places on the family," said the Weipperts. "We had an overwhelming outpouring of community support and realize that not all families are as fortunate to receive such tremendous support. The Sarah Grace Foundation is our way of thanking those who helped us - by helping others and by keeping Sarah's memory alive at the same time."

The mission of the Sarah Grace Foundation is to let everyone see life through Sarah's eyes and make their journey through such a menacing disease more bearable.

"Sarah had a unique love of live and a strong desire to live. Throughout her illness, Sarah matured into a brave young woman and a courageous fighter who was always smiling and never complained. From the time she was little, Sarah was always looking to help somebody else. We drew strength from Sarah's example," said the Weipperts. "She enjoyed crafts, music, ballgames and, in Sarah's memory, we want to ignite that same spark in other children."

Working with the Children's Center for Cancer and Blood Disorders at Schneider Children's Hospital at North Shore Manhasset - where Sarah herself was treated - the foundation provides financial aid, moral support and other assistance to not just the children receiving treatment, but to their parents and siblings as well.

"A lot of organizations we found along the way will not do anything for the siblings. Just the sick child, that's it," said Matt. "We saw firsthand how things affected James and as much as you try to do things for the siblings, they get left out of the picture. They too experience uncertain times and questionable futures. We hope to do just as much for the siblings as we do for the sick child."

Last summer, cancer patients and their siblings were treated to a free day at the Adventureland theme park in Farmingdale thanks to the foundation. Most recently, the foundation hosted both a Halloween and Holiday party for inpatients, outpatients and their families. Funding for the parties was made possible through generous donations, including entertainment, food and gifts. During the holiday season, the foundation also provided some 200 gifts to cancer patients at both North Shore-Schneider's and Nassau University Medical Center (NUMC).

"Our heart is certainly, because our resources are limited, at North Shore-Schneider's because they treated Sarah all those months," said Matt. "But the medical center made the diagnosis. We certainly feel an obligation to try and do something there as well." A long term goal, he said, is to be able to provide the same programs currently offered at Schneider's to other Long Island hospitals with children's cancer centers, including NUMC, Winthrop and Stony Brook.

Last summer, proceeds from the South Shore Motorcycle Club's rally and carnival benefited the foundation. Other local organizations and businesses have been an essential component in helping the foundation by donating either goods or services, including Long Island Balloons, House of Donuts, Town Bagel, the Long Island Drum Center, Tri Hardware, Bagel Boss on Woodbury Road, Apple and Eve Juices, Entenmann's, the Nassau County Candy Company, Sign-A-Rama, Yorkshire Foods, Uncle Henry's Trophy Shop and Scaturo's, to name a few.

Nancy Barbach, CSW, social worker for the division of pediatric hematology/oncology at Schneider's Children's Hospital, said the foundation provides quality of life to not just the sick child, but to their siblings as well. "When Sarah was ill, the way she coped with everything was through all kinds of crafts. These activities enhanced her quality of life. Without them, her quality of life would have been very different for days. These kinds of things put a smile on her face," said Barbach.

"Marissa and Matt saw what helped their own child and they are committed to helping other kids. That's a rarity. They are not just going on about their own lives and putting this behind them. They are saying that they really feel the need to make it better for other kids. They decided to honor her memory by providing such opportunities to other children who are ill, specifically with cancer."

Recently, a bead program was implemented at Schneider's in Sarah's memory. Through this program, beads of various sizes, shapes and colors are used to represent different aspects of the child's disease. At diagnosis, the child receives a chain with beads that spell out their first name and the date of diagnosis. From that point on, each phase the child goes through, including surgery, hair loss, chemotherapy, hospitalization, clinic visits, ICU stays, spinal taps and transplant as well as others, is marked by a different bead. There are also beads for bad days, good days and returning to school, as well as beads for the siblings.

"As they build the chain, they have something tangible to hold on to," said Matt. "Other than us forcing Sarah to get up in the morning and go to the hospital or clinic, there was never any incentive or reward to show even that she went, other than pain and suffering. [The bead program] is a little reward for a particular day's treatment, effort - however you want to look at it."

James added, "With them, [the sick child] can look back and remember everything they have been through."

According to Barbach, the bead program acts as a journal, enabling the child to chronicle his or her experiences. "It is a concrete memory that they can hold on to of their experience," said Barbach, who lives in Great Neck. "For a child going through something like this, [the bead program] honors what they've experienced and is a nice way of always having something to really depict what they went through. It also provides them with the knowledge that we honor them for their bravery and their ability to do what's asked of them."

The Weipperts are also working on providing Parent Journals, a bounded notebook that all parents will receive so that they can keep track of important information regarding their child's illness.

"From the day Sarah was diagnosed, we went through I don't know how many notebooks [keeping track of] everything we were told as well as information about the different medicines and what they were for," said Matt. "Since one of us was at the hospital at all times, we kept a running list of what happened during the night, what happened during the day. [The books] were helpful when it came to looking back or when we were changing shifts so to speak."

Barbach said the foundation enables the hospital to provide services to sick children, their families and siblings that they would otherwise not have the resources for. "Kids who are diagnosed with cancer are confronted with something that is really unimaginable. It alters the lives of kids who would otherwise be able to go to school, be with friends, engage in activities that healthy kids are able to engage in," she said. "It's wonderful that [the Weipperts] are willing and able to provide these kinds of services. Through them, we are able to do things we normally wouldn't be able to. The [Weipperts] are warm, caring, committed people and the whole staff is very grateful and committed to them."

She added, "[The Sarah Grace Foundation] really is a silver lining to an unfortunate experience."

For more information on The Sarah Grace Foundation for Children with Cancer, Inc., call 433-9745 or visit www.TheSarahGraceFoundation.org. Donations, which are tax-deductible, can be sent to the Sarah Grace Foundation for Children with Cancer, Inc., 217 Plainview Road, Hicksville, NY 11801.