CHARLOTTE, N.C. -- A Charlotte family is facing an unimaginable health scare, and it's wreaking havoc on the entire household.
Brothers Evan and Eli Haines can share hours playing what they call epic Lego games.
Evan is 15, Eli is 10--and the brothers are close, even sharing a bedroom in a house crowded with boys. There are four Haines brothers in all.
Mom home schools them, dad works from home and last year the close-knit family was dealt a horrible blow.
“We were in denial. We didn't believe there was anything wrong. She came downstairs and he’s sitting there eating his Captain Crunch. She says ‘I need you to hurry up and finish, we’ve got to go,’” said dad Bryant Haines.
After a round of tests, the doctor had called with stunning news -- Evan was in kidney failure.
“Kidney failure, it just sounds so terminal,” said mother Linda Haines.
The teen has what's called Nephronophthisis--lesions on his kidneys that prevent them from properly functioning.
The diagnosis explains his stunted growth and much more, and means he needs a transplant.
Until they find a match, he is on dialysis three times a week.
“That’s my robotic kidney but I’m hoping to get my new kidney soon,” Evan said from a seat at the Children’s Dialysis Center at Levine Children’s Hospital.
On non-dialysis days he has a temporary catheter. “My catheter goes into my neck, down through my neck into my jugular right next to my heart,” Evan said.
It’s been a big adjustment for the family.
“At first the focus was how do we deal with Evan,” Laura said.
That changed when they learned his disease is genetic—all the brothers were at risk.
“What these boys have is a very rare condition. They got a gene from each of their parents and when they have both of these genes it caused this condition,” said their doctor, Susan Massengill, the Director of Pediatric Nephrology.
Eli shares one more thing with his older brother--The 10-year-old is also in kidney failure.
Both brothers need a transplant. “This is a very unusual circumstance,” Dr. Massengill said.
Both parents are being tested to see if they are a match for either of their boys.
“It’s exponential,” Bryant said of dealing with both boys’ illness. “It’s not just double the problems or double the complexity. It’s huge. For us, it was ‘OK, this is our life and this is our family now. We need to redefine who we are.’”
They are sharing the burden of saving their sons’ lives, while admiring the way the brothers are sharing their fight.
“Being the older brother, I’ve been really walking Eli through this,” said Evan.
His advice to his younger brother?
They are preparing for the first transplant. Doctors just gave dad and Evan the go ahead.
The family is hosting a fundraiser on May 11. For more information go to