Baltimore 4-year-old's search for a life-saving kidney is set back after false match

BALTIMORE -- A 4-year-old from Baltimore is continuing her quest for a kidney after a match turned out to be a false alarm.

She was all set for a life-saving kidney transplant when at the last minute doctors informed her family that final testing had failed and it was no longer a match.    

Lucy, 4, suffers from kidney disease and has spent the majority of her life in and out of hospitals. 

In early October, she successfully found a donor after raising awareness via social media and the "Living Donor Project", a nonprofit that seeks to match living kidney donors to children on a kidney transplant waitlist.

However, as she was about to go in to get prepped for the surgery, the doctor told them the kidney match was not going to work. 

"Leaving the hospital Lucy yelled out 'Wait I didn't get my kidney yet,' It was quite devastating," Nicole Zais, Lucy's mother said. 

"It's the hardest thing because you want to protect your daughter, you want the world for her, and you want her to be able to live a normal life," Charlie Helmlinger, Lucy's father said. 

"We want her to be able to go to school, [participate in] the normal activities, to be able to run around on the playground and not have to worry about her feeding tube or if she's going to bust the port that she has in the middle of her chest," Zais explained.

The match would've been a huge milestone for Lucy and the longer she goes without a match, the sicker she becomes requiring extensive dialysis and other therapies.

"When they are on dialysis, you have to be hooked up for many hours, several times a week to the machine," Dr. Jennifer Verbesey, the Living Donor Transplant Program Director at MedStar Georgetown Transplant Institute previously told WJZ. "It's very hard for those kids to go to school. It's hard for them to have any kind of semblance of a normal life."

In the meantime, the search continues

While waiting for further developments, Lucy and her family continue to raise awareness about her condition.

"It's hard to realize how sick she actually is sometimes because it doesn't matter who, what, when, or where, she's gonna light up your day," Zais said.

John Paul Madina heads the Living Donor Project and told WJZ Reporter Miana Massey, "We want to help Lucy find the right match. Not just someone that can fulfill the match, the right match that's going to give her a lifelong journey."    

According to Verbesey, living donors compared to deceased donors tend to have healthier kidneys that work faster and last longer.  She also says the surgery typically allows the donor to go home the day after surgery and get back to their normal lives in just a few weeks.

"I just think that it's important that the whole concept of a perfect match doesn't really exist, and that anyone who's interested should start the process," she said.

Click here to learn more and find out if you're a match for kidney donation.