'Life Is Short – Hug Your Children:' Sarah Grace Foundation Supports Families Battling Childhood Cancer

HICKSVILLE, NY — The Sarah Grace Foundation was founded in 2003, about five months after Matthew Weippert's daughter passed away from an aggressive form of leukemia.

Sarah was 12 years old when she passed. She was diagnosed in Feb. 2002 and underwent different treatments, including rounds of chemotherapy, cranial radiation, and full-body radiation. Even with all of these procedures, she still did not enter remission. The next step was to try a bone marrow transplant. Weippert said to prepare for the transplant, she had to be in isolation leading up to it for six to seven weeks, and they had to find a donor.

"We were fortunate," Weippert, Sarah's father and executive director of the Sarah Grace Foundation, said. "Our son, James, who was nine going on 10 at the time, was a perfect match when they did all the testing."

Doctors harvested a liter of bone marrow from James' spine, processed it, and did the transplant. Weippert said that initially, Sarah rallied, but things took a turn for the worse after a few weeks.

During one of the follow-up visits in late July 2002, they discovered that she had relapsed and the leukemia had actually become more aggressive than it had been the first time.

She underwent experimental medications through August and September, and they managed to keep it at bay until Nov. 9, 2002, when tragically, she passed away. Just a short nine months had passed from the moment her family had learned the unthinkable news until the day they had to say good-bye to their precious girl.

"Sarah was a great, energetic kid," he said. "After she passed, we were all trying to figure out how to continue. How to pick up the pieces."

The family talked over the things that Sarah enjoyed and came to the decision to start a foundation in her honor to help children and families. They incorporated the foundation on her birthday, March 31, in recognition of her life.

23 years later, the organization works with most of the pediatric cancer centers on Long Island and New York, and even some in other states like Florida. If a family needs assistance, the Foundation can help in many ways. It can help with transportation, as well as with financial aid, including assistance with groceries, funeral expenses, hospital bills, prescription co-pays, household bills, gift cards, purchasing a toy for the child, etc.

The Sarah Grace Foundation works with social workers who refer families to the Foundation through its "refer-a-child" program. The foundation has a dedicated team of volunteers called "Sarah's Angels."

Weippert said they try not to get too involved with the families themselves, as the experience can hit a little too close to home.

"When we began, we did so with an emotional desire to keep our beautiful Sarah’s memory alive — because it is my belief that as long as someone’s name is mentioned and inspires goodwill in someone else, their spirit lives on and will never die," he said. "I fully believe that to this day, and I pray Sarah is smiling down on what Marissa and I, our son James, and our team of Sarah’s Angels have been able to accomplish. Not too shabby for a group of volunteers that united to make a difference."

He said Sarah Grace's Foundation's motto is: "We don’t do research; we provide smiles for children one child at a time."

Along with financial costs, the foundation has other programs and events. They will be running a clothing drive at Hicksville High School from Feb. 23 until Feb. 28. Games, toys, and puzzles will not be accepted at this drive. They ask that the clothing be dropped off in a securely-tied garbage bag, and donation receipts can be requested.

They will also be hosting a magic show fundraiser on April 10. The magic show will feature Will Fern, a "high-energy" magician. The event will be held at 7 p.m. at the Milleridge Inn, located at 585 North Broadway, Jericho, NY 11753. Advance purchase of tickets is required and can be made by calling 516-433-9745. Tickets are $125 per person, and there will be dinner and a show, including beer, wine, soda, coffee, and dessert. There will also be raffles. More information can be found online.

The foundation also has other programs to celebrate the things that Sarah liked during her short but beautiful life. In the fall, the foundation shipped out 575 Halloween trick-or-treat goodie bags and provided fall craft projects for children at local pediatric cancer centers.

A child can be in treatment for hours or all day, and Weippert said having an activity for them helps to distract them. This is where their program, the Escape Hatch, stemmed from, he said. It's a cardboard box that's made to look like a suitcase, and inside are items donated or purchased by the foundation, such as bandanas or pillow cases, and fabric markers for the child to personalize and color. Also included are Mad Libs books, disposable cameras, or card games.

"That's our way of saying, 'Open up this little box of goodies, and escape from all the negativity and everything medical going on around you, and be a kid,'" he said.

Sarah loved craft activities, so the foundation has another program in her memory dedicated to providing the experience to others. If a child wants to participate, they are given an elastic cord and beads to add. Each time the child has a treatment or hospital stay, or any similar experience, the social worker or Child Life worker can give the child a bead. They add the beads to make a necklace or bracelet.

Weippert said that sometimes, if a child finishes treatment and returns to school, the psychologist will give a presentation to the school to help the class understand what the child endured.

"Some of the kids will bring in their bracelets, necklaces, whatever they made, and they could tell the story," he said. "It would be meaningful to the kids."

He added that some social workers have said that if a child passed away and couldn't complete their bracelet or necklace, the beads were requested so the families could complete the jewelry in their cherished memory.

"It's meaningful to the families," he said.

The Chemo Duck program helps children through their treatment. The Chemo Duck stuffed animal is similar to a Build-A-Bear. It comes wearing hospital scrubs and either with a port or Broviac, two ways in which children can receive their chemo.

The duck comes with a coloring book to help put the child at ease. The ducks are designed to be personalized, so a child can dress them up in any Build-A-Bear clothing.

"That's what the program is designed to do — to minimize the anxiety and the stress of a child who is having to go through all of these treatments — and the chemo duck helps them understand," he said.

The Child Life and nursing staff use the soft duck as a therapeutic teaching tool to show the child how they're going to receive their medication.

"Some of the children will take care of the duck and treat the duck like they were being treated," he said.

Weippert said he appreciates all of the help they receive from schools and businesses on Long Island. The foundation has worked with many local businesses across the Island, including Ray Leventhal in Plainview, with Marcie's help. They have hosted drives for backpacks and toys for children.

"She does a lot for us," he said. "Children with cancer have compromised immune systems, so they're being homeschooled or being tutored in hospitals, and they still need supplies."

Sarah loved to read, so the foundation came up with another impactful program, Weippert said. The foundation receives donated books that are brand new, as children with cancer have compromised immune systems, and these books get put on carts at several hospitals in New York.

The foundation also purchases some books with the help of a local bookstore that will discount some for them. Scholastic Books will also provide discounts for the foundation, he said.

Children can also request books they would like through their social workers or Child Life.

"We'll have the carts stocked with what they've requested," he said. "And the child can take it home, keep it, and then we'll replenish the cart."

For those who want to contribute, Weippert said the best way would be through making a donation on their website. A note can be added about what they would like their donation to go toward, such as the Chemo Duck or bead program, etc.

The foundation also has an event called Hugs for Sarah Virtual 5K; registration costs $35, and then the person gets a race bib. Participants do the race on their own through an honor system — the event can be completed in a day or by walking a mile a day.

That event usually falls around the time of Sarah's birthday in March as a way of honoring her. Local schools have students participate on the tracks at their school. Everybody who participates gets a medal.

Weippert said the foundation also used to distribute Hershey's Hugs & Kisses in little pouches to people at events, such as at blood drives.

"We call it 'Hugs for Sarah,'" he said. "It became a whole hug for Sarah. Life is short. Hug your children. You don't know what's going to happen tomorrow. Make the best of today and do something with your children, for your children, and most importantly, give them a hug."

Weippert said he hopes the foundation can continue to support families and children for many years.

"No matter how many or how few, if we can make life a little more bearable for a child going through these treatments and this crazy disease, and help every child that we can, then that is what Sarah would have wanted," he said.