James, Nicholas and Nicole Angiolino pose with a portrait of Joey Angiolino, who suffered from a condition called Hurler Syndrome and died at 15 months old. (Photo by Suzette J. Lucas.)

Everywhere James and Nicole Angiolino go, they see their son Joey.

He’s in a drawing on their kitchen wall, his big, vibrant eyes keeping a close watch on loved ones. He’s with any of the hundreds of people wearing one of those black T-shirts James and Nicole had made with the little wings on the back. He’s anywhere there’s a child helped by the program started in his honor.

In Italian, Angiolino means “little angel.” James and Nicole Angiolino believe they’d been graced with one, a bundle of optimism who kept them going through months of uncertainty, a crushing diagnosis and a long and arduous relocation to a hospital 430 miles away from family, friends and life as they knew it.

Of course, it was Joey who had grim prospects. He was the one with Hurler Syndome, a disease so rare that he had the first case ever seen in New Jersey. But Joey smiled through it all, providing his family with purpose.

Joey died in July 2010 at 15 months old, but his ability to inspire others did not end there. In the year after Joey’s death, the Angiolinos started an organization called Joey’s Little Angels and raised more than $10,000 for the Duke Pediatric Blood and Marrow Transplantation Family Support Program, about 10 percent of the money the Duke program received last year.

PBMT Family Support Program relies entirely on donations and aids families with sick children at Duke. At one point, the Angiolinos were one of those families.

Now, the Angiolinos have made it their focus to ensure the world remembers the legacy of Joey, their little angel, by helping people in the same position they once were.

“He made everyone around him better in one way or another,” James Angiolino said. “As long as we’re continuing to do stuff like this, and kids wear T-shirts and bracelets, his memory is going to live on. We don’t expect him to be a hot topic ... But if we can do a little bit, give back to the people that helped us so much, then we’ve done our job by keeping his memory alive.”

In late November, Angiolinos asked people to donate a gift for a child at Duke’s Division of Pediatric Blood and Marrow Transplantation, a 16-bed facility that treats 80–100 children every year. The community responded by donating more than 100 toys. The haul filled an entire room in the Angiolinos’ Hamilton home.

It took several days for the family to figure out how to ship all the presents to North Carolina in a cost-effective way. The Angiolinos used their own money to pay for shipping.

Both James and Nicole said the support overwhelmed them, but perhaps they shouldn’t be surprised. That’s how people have responded to Joey’s story all along.

Joey lived for just more than a year, and he spent much of that time in a hospital or undergoing tests and procedures intended to extend his life.

He received the Hurler Syndrome diagnosis at 8 months old. According to the U.S. National Library of Medicine, people with Hurler Syndrome do not make a specific enzyme that helps break down long chains of sugar molecules. These molecules are found throughout the body, often in mucus and in fluid around the joints.

Without the enzyme, the molecules build up and damage organs. Symptoms can range from mild to severe, and can include abnormal bones in the spine, cloudy corneas, deafness, halted growth, heart valve problems, joint disease and progressive mental retardation.

Because of the harsh nature of the disease, doctors warned the Angiolinos at the time of diagnosis not to read about Hurler Syndrome online. But James and Nicole, both 31 and teachers in the Hamilton Township School District, did research anyway, and that research led them to the Duke PBMT.

They’d have gone to another planet to help their son. So the Angiolinos did the only thing they could do when the doctors at Duke presented a plan to transplant cord blood cells in Joey, a plan they said could save his life. Nicole packed up and left with Joey for North Carolina the next day.

Two weeks later, James joined his wife and son in Durham, leaving the Angiolinos’ first child, Nicholas, with family. Nicholas was only 2. But Joey’s condition demanded sacrifices from the entire family, and James and Nicole hoped their oldest child would understand.

At the time, Nicole’s brother, Michael Rogers, was playing professional baseball in North Carolina about 10 minutes away from Duke, and the Angiolinos stayed with Rogers as doctors did preliminary tests on Joey.

Once Joey was admitted at PBMT, the Angiolinos stayed at the hospital with their son. They were there for four months.

“Being on that floor for as long as we were, you see so many different children with different diseases,” Nicole Angiolino said. “None of them are good. They all were just horrible. And everybody is pretty much in the same boat.”

Still, the Angiolinos had hope, as the cord blood transplant was successful, changing Joey’s blood type from A-negative to B-positive. They took the change as a message from their son to remain upbeat, even as they had to remain in North Carolina to ensure there were no complications.

Joey was discharged from the hospital, but continued to have outpatient tests. The Angiolinos rented an apartment a few minutes away from the hospital.

Joey died during that stage.

“I’ll never go back to North Carolina again,” James Angiolino said. “I’ll never go back there.”

But the Angiolinos have kept a connection there, speaking with the people at the PBMT Family Support Program often and devoting all their charitable efforts to that program.

The Angiolinos are hosting an invite-only fundraiser April 7—one day after what would have been Joey’s third birthday—at Mercer Oaks Catering Hall, with all proceeds going to the PBMT Family Support Program. The cause is clearly personal for the Angiolinos.

“When we went there, we had our mortgage here, our bills here, cars,” James Angiolino said. “Then when we went down there, we had an apartment, we had bills. We essentially moved with nothing. We were fortunate enough that we had jobs. We knew people who lost their jobs because they were out of work so long with their sick kids. How is that fair? We can help people.”

And they clearly have.

But when good feelings from helping others fades, an absence remains. They know they will never replace Joey, but they continue to build a family. The Angiolinos are expecting twins—one boy and one girl—at the end of the month.

They can’t wait to tell the twins about their big brother, Joey the little angel.

If you would like to support Joey’s Little Angels, checks can be sent to Scott Mofield/Duke University Hospital/Duke PBMT Family Support/DUMC Box 3350/Durham, N.C. 27710. Make checks out to Duke University PBMT Family Support and put “Joey’s Little Angels” in the memo. For more information, go online to cancer.duke.edu/pbmt/support/family.asp.