Quilt honoring kids lost to cancer stops at Oakland Mall

By: Terry Oparka | Troy Times | Published July 16, 2013

 The family of Andrew Wayne Smith, who lost his battle with cancer of the brain stem at age 8 — mother Sandy, father Shawn and sister Charis — touch his square on the National Angel Quilt that was on display at Oakland Mall July 12-14.

The family of Andrew Wayne Smith, who lost his battle with cancer of the brain stem at age 8 — mother Sandy, father Shawn and sister Charis — touch his square on the National Angel Quilt that was on display at Oakland Mall July 12-14.

Photo by Deb Jacques

Before his cancer diagnosis at age 10, Malcolm Sutherland-Foggio, now 15, was the fastest sprinter in his class at his school in New Jersey. He did well in the long distance runs, too.

Although he wouldn’t risk running now, he’s on a roll. Sutherland-Foggio wears a lift on his right shoe after a fall in which he fractured his knee. He had been using his crutches on a family vacation after his treatments for Ewing’s sarcoma drastically reduced his bone density, and he was working to regain his walking skills.

Ewing’s sarcoma is a highly aggressive bone tumor, and Sutherland-Foggio treatment included 14 rounds of chemotherapy, surgery to remove his hip, radiation and grueling physical therapy.

He is now in remission and focused on raising awareness and funding for pediatric cancer. He is on a summer road trip displaying the National Angel Quilt at stops in Des Moines, Iowa; Kansas City, Mo.; Tulsa, Okla.; Dallas; and Birmingham, Ala., to raise money to fund pediatric cancer research.

He and his mother, Julie Sutherland, displayed the quilt and chatted at Oakland Mall July 12-14 with families who had lost children to cancer.

Currently, 165 children’s panels have been submitted for the quilt. Not all of them are complete and stitched into the quilt yet. Life spans of the children whose faces make up the quilt are all different, some only two years. And each square is unique. Some are as simple as a face, a name and a birth date. Some include quotes from journals the children kept.

Since he and his mother founded the nonprofit Make Some Noise Pediatric Cancer Research Foundation in 2009, the foundation has raised more than $1 million for cancer research.

Sutherland-Foggio wanted to give faces to the children, some 2,000 to 3,000 a year in the U.S., who lose their battles with cancer each year.

“The quilt was the perfect vehicle,” Sutherland-Foggio said. “I thought once people knew about this, they would act. It’s not just statistics, but real kids who are not here anymore. They could have been doctors or scientists or leaders. We’ll never find out.”

He explained that cancer in children from birth to age 21 is considered childhood cancer. Protocols are different for children than for adults, although those age 19 sometimes don’t realize their cancer should be treated and considered pediatric cancer, which is treated with stronger dosages.

The prognosis for pediatric cancers is grim. Sutherland said that, according to the U.S. National Institutes of Health, 80 percent of childhood cancers have metastasized by the time it’s diagnosed, and 75 percent of children who survive face long-term side effects from the treatments they received as growing children.

Also, unlike many adult cancers, there is no early detection or screening for childhood cancer.

“They need to see the faces,” Sutherland said. An artist who paints realistic scenes from her photographs in oil, she and her mentor, Jonathan Linton, created the National Angel Quilt logo after he unexpectedly told her he planned to come to her home and “help with whatever she was working on.”

“The logo gave us instant credibility,” she said.

Sandy Smith and husband Shawn came to Oakland Mall with their daughter Charis, from Dewitt, Mich., July 12. Their son Andrew was born in 2001 and is one of the children on the quilt.  He suffered from diffuse intrinsic pontine glioma cancer of the brain stem, and died at age 8. Four children from Michigan are featured on the quilt.

Sandy Smith explained that the community of families whose children have cancer is a tight-knit group that spans the entire country.

She said researchers have said that identifying the cells that comprise DIPG may hold the key to curing a number of other cancers for children and adults.

Sheila Jones, a Troy resident, lost her grandson Sammy Jones to DIPG at age 6 in February 2008.

“God sent us an angel,” she said of her grandson.

While Sammy is not on the quilt, Jones knew many of the families of the children who are commemorated on the quilt.

“Parents are given no hope and no cure,” Jones said. “I feel my mission is to raise awareness and help to fund research.”

Sutherland-Foggio would like to expand the display to include a kiosk to make it more interactive and feature videos of some of the children.

“I want them to see that ‘Alexander the Great’ (featured on the quilt) was not just a sick kid at the hospital, but see his reaction to the first time he saw a popcorn popper.”

Sutherland-Foggio has also written a memoir titled “If You Are Alive, Act It,” which will be available this fall.

For information or to contribute to Make Some Noise, visit www.makenoise4kids.org or call (973) 656-1111.