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3 sons, 1 rare disease: Holland family fighting multiple cases of FSGS

Posted at 4:45 PM, Feb 06, 2015
and last updated 2015-02-06 18:41:40-05

HOLLAND, Mich., -- AJ and Jessica Brann never knew how strong they were, until being strong was the only choice they had. They've lost a son to a rare kidney disease called Focal Segmental Glomerulosclerosis (FSGS) and currently have another diagnosed with the same condition. Their youngest son at one and a half years old has also begun to show early signs of the disease.

"We were kind of in denial at first, telling ourselves that it was just allergies. That it was just something, anything, other than a third time. We were like, we really don't want to deal with this again," explained father AJ Brann. "One time is too many times."

The Branns had never even heard of FSGS when their firstborn son Taylor received the devastating diagnosis. There is no cure for the disease, which impairs the filter and function of the kidneys, basically scarring the organs.

Taylor had both kidneys removed and was waiting for a transplant. His uncle was going through the pre-transplant process to become his donor when Taylor passed away on May 27, 2013 at the age of 5. Months later, the family learned that Sebastian, 5, also had FSGS. He is now waiting on a transplant, like his older brother.

"He's basically at the same exact point Taylor was when he passed away," AJ told FOX 17 News. "He has no kidneys left. He's doing dialysis everyday. Currently, he's doing 14 hours."

Late last year, the couple's baby son Baxter also began to display symptoms of FSGS. Doctors have said he's in the early stages of the disease. Their middle son, 3-year-old Edison, is the only child not to show any signs of the kidney disorder.

"We believe it's genetic in our case," said Jessica. "It's a lot. It's a lot to take in. Right now, it's just day by day. You can't think about the future."

The family has found some comfort documenting their journey on Facebook and say they've received support from all over West Michigan and around the country. A New York-based non profit called Ride to Giveraised more than $20,000 dollars to help the family. The Branns are using the money to move from their downtown Holland apartment into a bigger house as they anticipate having another son on dialysis soon.

"Here, we don't have enough technical bedrooms that have the power needed to do dialysis on the kids, at this new place we will," said Brann. He added the family is thankful for all the support.  "We're unbelievably grateful for all the help that we've had. We really could not have done any of this without the kind of support that we've had. If we hadn't had the support, I couldn't even speculate where we'd be."

The family hopes to move into the new home by the end of the month. They also hope Sebastian will be able to undergo transplant surgery by this spring.

To follow the "Brann's Family Journey" on Facebook, click here.

A GoFund Me account has also been set up to help the family with ongoing medical and other expenses. If you'd like to donate, click here.