By the Forsyth County News
On Feb. 1, 2011, Hyde Talbot underwent a kidney transplant and began an experimental drug treatment.
He’s the first person in Georgia and third in the nation to undergo the combined efforts, which could lead to helping him and others with a rare condition.
Talbot’s transplant took place at Children’s Healthcare of Atlanta at Egleston, where he has been recovering, with a team of international leaders in transplant surgery and immunology.
“He’s doing great,” said his mother, Phyllis Talbot. “Everything’s rocking along.”
Hyde is one of just 300 to 600 people in the United States with atypical hemolytic-uremic syndrome, more commonly known as Atypical HUS.
The condition is a genetic blood disorder that causes the immune system to attack red blood cells, eventually destroying the kidneys and renal and immune systems.
It’s caused by a mutation in the gene that produces Factor H, which helps control the immune system.
Phyllis Talbot said when Hyde was first diagnosed at 18 months old, the only true treatment was a combined kidney and liver transplant.
Treatments have since advanced and a new, experimental drug combined with the kidney transplant may be as effective.
She said the family was excited about the procedure, but it was also “nerve-racking.”
“We’re just taking everything one day at time,” she said.
They’re hoping the combination treatment will be effective since a liver transplant involves more complications.
“A liver transplant is much more risky,” Talbot said. “There’s only a 50 to 75 percent survival rate. That’s why we chose to go this way.”
In the years since he was diagnosed, Hyde has experienced failure and removal of both kidneys, severe high blood pressure, anemia and low blood platelets.
He’s had to undergo a variety of treatments including blood transfusions, hospital stays lasting weeks at a time, and 10 hours of dialysis every night to do the work his kidneys would normally do.
The new drug blocks the immune system from breaking down red blood cells, and the new kidney will hopefully restart his renal system.
“Atypical HUS is a terrible heart-wrenching disease, but you have to confront it head on,” Phyllis Talbot said.
She and husband Bill, along with their extended family and neighbors, have done just that.
In 2009, they launched an annual fundraiser called Hike4Hyde, which benefits the Foundation for Children with Atypical HUS and Children’s Healthcare of Atlanta.
The event has raised $52,000 for research. The 2011 Hike4Hyde will take place April 16 at Sawnee Mountain Nature Preserve.
Hyde’s uncle, Warren Chase of Pennsylvania, helped in an invaluable way. Chase, who’s related to the family by marriage, was Hyde’s kidney donor.
Phyllis Talbot said Hyde required a donor who was not a blood relative since his condition is genetic.
She said her brother-in-law’s generosity has been amazing.
“He’s just so cool,” she said, adding that Hyde doesn’t yet understand the gift he’s received.
Talbot related how one of the nurses told Hyde he should be grateful to his uncle for the present.
“[Hyde] just looked at her with a confused look and said, ‘I’ve gotten lots of presents,’” she said.
“It’s hard for a 4-year-old to understand why all this is necessary. He just wants to be a normal little boy.”