Hope grows for young Racine County boy in need of lifesaving kidney transplant
FRANKSVILLE, Wis. (CBS 58) -- The new year brings renewed hope for the parents of an eight-year-old Franksville boy who learned in 2024 his kidneys are failing and he's going to need a transplant. A recent connection is easing some of their concerns, so much so they want to spread the word and help others like them.
"It's misleading because when you look at him you would never know," said Danielle Scott, Theo's mother.
But what's easy to know is how much Theo Scott loves to play guitar. He's going solo today but tells us he has a dream to one day be in a band with his big brother Luke.
"As an eight-year-old, he sees things. He understands things to whereas his parents we forget he's eight," said Eric Scott, Theo's father.
The brothers share a friendship that goes beyond music.
"Him and Lucas, his older brother they have such a great bond you know he loves playing with his brother and even with his behavior you would never know the internal struggle that he's actually dealing with," said Danielle Scott.
The Scotts were clued-in to that struggle thanks to an alert OB-GYN.
"It was just more in-depth ultrasounds that's really what it was," said Danielle Scott.
Mom was given those in-depth ultrasounds actually because of Luke. At three months old, Luke underwent surgery because of a tethered spine.
"It was hard the first time. Going through something like that with my first-born son and to know that my second wasn't going to be born necessarily healthy was, it was a lot," said Danielle Scott.
Theo was born with renal disease and ureteral obstruction, listed as failure to thrive.
"I was in and out of the hospital for the first really three months of his life, back and forth to Children's," said Danielle Scott.
Then right at three months of age just like his big brother, Theo had surgery, testing the couple's faith.
"Why God did this happen to us with Luke, but if that didn't happen to him, we could've lost Theo," said Eric Scott.
Over time, things got better. Theo's numbers stabilized, and life went on.
"Thoughtful warm hearted little boy, he loves sports, he actually loves to help me in the kitchen quite often which is great," said Danielle Scott.
"You're gonna eat all these peppers, right?" Danielle Scott asked Theo in the kitchen.
But in the last year…
"The creatine level jumped up and his b-u-n also. I think I was already super emotional you know it was the doom and gloom kind of feel," said Danielle Scott.
"As a parent you're just helpless, it's like what can I do? What can I do? Nothing? Oh I just got to sit here and wait?" said Eric Scott.
Eric Scott shares the same blood type as his son, but it's yet to be determined if he's a match.
"Right now, his one remaining kidney is working at about 25 to 30 percent and then at 20 percent then they get okay let's find donors," said Eric Scott.
UW Health runs a paired kidney exchange program.
"I'm still gonna donate my kidney regardless because I can donate it to someone else and then Theo will get like a coupon, first in line for somebody else. It's ok to cry. It's ok to feel the pain, but then also we got to remain, we got to keep going, we got to smile," said Eric Scott.
While the jokes may be good for coping…
"You know hey what kidney of daddy's do you want?" said Eric Scott.
What's easing some of the financial pain is a connection they've made with COTA; that's Children's Organ Transplant Association.
"COTA's helped us realize the financial part of Theo's journey," said Eric Scott.
"Our very first patient that started everything that is COTA today is a little boy that needed a liver transplant, and his mom and dad learned that even though they had health insurance, it didn't cover transplant -13 and so their community of Bloomington raised about $100,000," said Rick Lofgren of Children's Organ Transplant Association.
COTA works with families like the Gorantlas to help raise money for the transplant and beyond.
"And he started dialysis when he was five days old in the NICU. His kidneys never worked. He spent 106 days in the NICU at Peyton Manning Children's Hospital," said Mary and Kaylan Gorantla.
"It's not just what do we need to do to get your child home? It's what do we need to do to set them up for life?" said Lofgren.
"Trips to the hospital for the rest of his life, medications for the rest of his life, possibly another transplant," said Eric Scott.
"Making people aware of COTA I think is very important," said Danielle Scott.
"I've had hours of conversations with the wife of how to deal with this. I can't fix it. I hurt. You know I cry to her," said Eric Scott.
But it's happy tears when they see how much joy their songs bring to each other.
"It’s pretty cool to have a nice brother and who likes to take care babysitting me," said Theo Scott.
We asked 12-year-old Luke Scott, "And what do you think about Theo?"
Luke said, "He's a cool guy. Why's he a cool guy? He's wearing his hat like that and then he always acts like he's really cool."
"When you realize their relationship together, it always makes me cry," said Eric Scott.
Last year, then 11-year-old Luke had a second tethered spine surgery. In the recovery room that's really when mom and dad saw the bond these two share.
"And they just both start crying looking at each other through Facetime and that just tells you, they just needed each other. Theo wasn't right without his brother and Luke wasn't right without his brother," said Eric Scott.
A relationship given the chance, thanks in part to steps taken to help Theo, all because of concern following that first surgery for Luke
"He feels like a superhero I guess," said Theo.
"Yea I'm technically a superhero," said Luke.
"It blew my mind. It actually felt like he was a superhero and saved my life. So, thank you brother," said Theo with a smile on his face.