Melyssa Perkins was 25 weeks into a healthy pregnancy with her first child when she began to have abdominal pain. She called her local nurse who said she was probably dehydrated, but when water didn’t help and the pain increased, Melyssa and her husband Jamie rushed to nearby Beverly Hospital, where they discovered that she was fully dilated.
“I don’t think I said one word at that point. I was in complete shock,” recalls Melyssa. Two hours after the couple arrived at the hospital, their son Jace was born at 1lb. 12 oz. Beverly Hospital stabilized Jace and arranged for immediate transport to the Neonatal Intensive Care Unit (NICU) at Boston Children’s Hospital.
When Dillon McCarty was 13, he received a very special gift from his stepfather Nicholas Gula—a new kidney.
But Gula, 34, didn’t donate his kidney to Dillon. Instead, he gave it to a stranger, a 29-year-old man also in need of a kidney transplant in Atlanta. And in return, the man’s wife gave her kidney to Dillon.
The carefully choreographed “operation” involved two selfless donors, two flights, two states, three hospitals and four surgeries—more than one thousand miles apart—inexplicably tying two families.
“It was a dream,” says Gula. “I was saving two lives. Words can’t even express how I felt.”
The reason for the kidney exchange was simple. To be a match, a donor’s blood type and antibody testing must be compatible with the recipient. Dillon had relatives—including his stepfather—who were willing to donate, but those donors were incompatible. Only his mother Samantha McCarty was a match, but not one that would work for Dillon.
Hemophilia has always been part of Kayla Klein’s life. Her father, David, had the condition. Her son, 6-month-old Robbie (that’s him above), has it too.
For years, though, Kayla has also surrounded herself with the right people—people who know hemophilia and who have helped her and her husband Joel create a life where the condition isn’t something that happened to them. Rather, it’s part of their family’s normal. And they’re determined to make sure that it will never keep little Robbie—or them—down.
A life embedded in hemophilia
David died when Kayla was just shy of two. But it wasn’t from his hemophilia. Rather, like so many others in the 1980s and 90s, he died because the blood products he took to keep the disease under control were contaminated with HIV.
Hemophilia remained a lurking presence in her life growing up, but started coming to the foreground when she and Joel married. Because Kayla carries the hemophilia mutation in her genes, they knew there was a 50/50 chance that if they had a son he would have the condition himself.
When the couple started asking questions about hemophilia and family planning, a colleague of Kayla’s introduced them to Lori Dobson, a genetic counselor at Brigham and Women’s Hospital.
Ultimately, after working with Dobson to understand their options, Kayla and Joel decided to just go for it.
“We realized that we could do lots of things and not have a baby with hemophilia, but could still have a baby with something else,” Kayla recalls. “We decided to just go ahead and see what happened.”
In 2012, just before starting kindergarten, Sammy Meyers had the first of what would become thousands of seizures.
“I found him semi-unconscious,” recalls his mother, Becky. “I thought he was choking and checked to see if his airway was open, and then called 911. It didn’t even cross my mind that he was having a seizure.”
But Sammy had recently been falling a lot. The neurologist in the local emergency room in Albany, N.Y. diagnosed epilepsy, but thought it was a relatively benign form that medications could help.
Instead, Sammy got worse. “Within a matter of months, he went from four seizures a day to hundreds,” says Becky.
Sammy was having head-drop seizures, involving a sudden loss of muscle tone; myoclonic seizures, causing muscle jerking; and absence seizures. He would lose consciousness, sometimes so abruptly that his head would slam down on the table. Eventually, he was diagnosed with Doose syndrome (myoclonic astatic epilepsy), a severe form of generalized epilepsy that is known to be medication-resistant.
Through the Epilepsy Foundation of Northeastern New York, Becky knew of another child with Doose syndrome who had been treated with a high-fat, very low-carbohydrate diet called the ketogenic diet and was still seizure-free after four years.
The Albany neurologists were skeptical, so the family contacted the other child’s neurologist, Ann Bergin, MB, ScM, at Boston Children’s Hospital. “By this time, Sammy was having a seizure every 30 seconds to a minute,” says Becky.