NORTON – Only 6 months old, little Gabriel Beres, of Easton Road, needs a liver transplant.
“When he was about three weeks old, we took him to the hospital for a urinary tract infection,” his father, also Gabe, said. “They tested his liver enzymes and they were off. They did a biopsy and sent it to Cincinnati and diagnosed him with PFIC type 2.”
“PFIC” is progressive familial intrahepatic cholestasis, a rare liver disease caused by a mutation in the gene that controls the bile salt export pump in the organ. Retention of these salts damages the liver cells.
PFIC comes in three types and is a recessive, inherited disorder seen mostly in children of incest.
Gabe and Sonja Beres, however, despite meeting in the third grade, are not close relatives.
“They asked us if we were brother and sister,” Gabe said. “It was just a one in millions chance that we had exactly identical genes for this condition.”
There is no treatment for this condition. Little Gabe’s only hope is a liver transplant and his father said he is “first in line” on the waiting list.
“I’m pacing the floor,” the dad said. “The waiting sucks.”
In the meantime, Big Gabe makes regular trips to Cincinnati and has a suitcase packed and carries a pager for the time when an organ becomes available.
“They say I have five hours to get there when I get the call,” Gabe said.
A former truck driver, he has parked his rig and become a “stay-at-home dad” for the duration.
“I’m proud to say I’ve spent time every day with my little boy since he was born,” Gabe said. “I’ve got kind of a Cal Ripken streak going.”
Sonja is a registered nurse, so the sick boy is in good hands and the family has good insurance, but it only goes so far. The family has allied with the Children’s Organ Transplant Association, which subsidizes the expenses insurance doesn’t cover, like deductibles, copays and the frequent trips Gabe has to make to the other end of the state.
The organization replenishes the money by accepting donations in Little Gabe’s name and helping coordinate fundraisers.
“Even before we signed up with COTA, we had this big spaghetti dinner where we raised about $10,000 and donated it to them in Gabe’s name,” Gabe said.
A bowling event, this one coordinated through COTA is in early planning stages, tentatively set for February.
“I’m still not sure exactly how that will work,” Gabe said. “This is still in the incubation period.”
COTA ensures the work of helping their children is a community affair. Volunteers are being sought for the long string of fundraisers that will follow Little Gabe as he undergoes his transplant and grows up with his new liver. Gabe’s great-aunt, Joann Quatraro, is the community coordinator and is helping put together the fundraisers and coordinate the volunteers. She can be reached at 330-310-6580 or at email@example.com.
COTA will also accept direct donations in Little Gabe’s name, either by mailing them to Children’s Organ Transplant Association, 2501 W. COTA Dr., Bloomington, IN, 47403. Make the checks payable to COTA with “In honor of Gabe B” on the memo line.
Donations can also be made online at www.COTAforGabeB.com.