Published on in HI Hope
There is no doubt that Oliver Fallon is one of the lucky ones — if you can call getting a rare disease like congenital hyperinsulinism (HI) lucky.
Oliver didn’t have any signs of low blood sugar until he was weaned from breastfeeding at 6 months old. When he had a seizure at home, his parents rushed him to Mount Sinai Hospital in New York City, where the emergency room doctors tested his blood immediately and found the hypoglycemia. Physicians there were able to diagnose him with HI within a week. Oliver was put on diazoxide, and it worked. With the medication and some diet changes, his HI was well controlled.
To top off his good luck story, Oliver has outgrown the disease and is no longer on medication, putting him among the approximately 5 percent of medically managed HI patients able to halt medication. Oliver, now 9, is a typical kid; he plays baseball and the piano.
But his grandfather, Clifford Goldsmith, knows there are other children whose experience with HI is much more difficult. To help them and future patients, Goldsmith has made generous donations to the Congenital Hyperinsulinism Center at The Children’s Hospital of Philadelphia to fund HI research.
“I know it’s hard to find funding for rare diseases,” says Goldsmith, a trustee at Mount Sinai who has funded a center for multiple sclerosis there in memory of his daughter Corrine, who had MS. Why CHOP? Even though Oliver was doing well on the medication eight years ago, his doctors had put him on a low-protein diet. Oliver’s mother and Goldsmith’s daughter, Alex Fallon, says her father was “Googling around and found out about Dr. (Charles) Stanley and suggested we talk to him.”
When Oliver came to CHOP in 2004 for protein and fasting tests, Goldsmith and his wife, Katherine, came along. “I was so impressed by everything that went on at CHOP,” Goldsmith says. “They did so much to help Oliver.” The first set of tests showed that Oliver could indeed eat protein without making his blood sugar plummet. That allowed him a more balanced diet. And a year ago, Oliver came back to CHOP for more tests that showed he didn’t need diazoxide anymore. In between, Goldsmith had met with Charles Stanley, MD, who founded the HI Center, and Diva D. De León-Crutchlow, MD, the center’s director. His favorable impression of the HI Center grew, and he signed on to support its research. The HI lab is now named Fallon-Goldsmith Hyperinsulinism Laboratory in honor of his gift.
Every Monday, Oliver goes to his grandparents’ apartment in New York City for his weekly piano lesson. Afterward, he stays for dinner and listens to his grandfather talk about his childhood in Germany. Goldsmith left Germany when he was 16, went to college in England, came to the United States when he was 20 and, when World War II broke out, volunteered for service in the U.S. Army. He was captured by the Germans and spent five months as a prisoner of war in Germany.
It’s compelling stuff for a 9-year-old with a penchant for history. But Oliver has fought his own battle and, remarkably, he’s won. And now his grandfather is arming CHOP’s HI Center to continue the fight to find better treatments and hopefully, one day, a cure for congenital hyperinsulinism.