GREENSBORO, N.C. -- Lindsey Milani and her daughter Mackenzie lead a colorful life. Walking into their two-bedroom apartment, you’re instantly met with a bright red couch, photos of the two dressed as Batman and a guitar hanging on the wall, with an Elf on the Shelf doll hanging on in the middle of summer.
Mackenzie’s health is also a bit colorful.
Kenzie as she’s called, had seven surgeries in her short 14-year life span. Kenzie was born with several birth defects.
“Essentially without a bladder is the cliff notes version is what we typically say. And since she didn’t have a bladder, she had damage to her kidneys in utero,” Lindsey explained.
Lindsey and Kenzie went to specialists in New York, Washington and Ohio. By the time Kenzie was in the 8th grade at Northwest Guilford, she spent over 50 hours in the operating room.
“With the surgeries and everything she had, getting different infections, her kidney function just started to decline,” said mom.
Recent tests showed Kenzie’s kidneys might not last through puberty, as she is now in stage four of kidney failure. She takes eight to ten pills a day and spend hours at school and home changing her catheter. She’s on a strict no dairy, no phosphate diet and must drink two liters of water a day to avoid dehydration and subsequent hospitalization.
Lindsey said, “She has to drink water like it’s an Olympic sport is the joke we always make.”
Despite a permanent smile plastered on her face, Kenzie said it’s difficult to live a normal life at times.
“Staying on top of my school work and competing in guard, it’s a lot to handle and my medicines, have to make sure I take those on the time and just being a normal kid,” said Kenzie.
The teenager loves reading and writing and is an active member of the color guard. She starts high school in the fall of 2017, but knows her quality of life will decline further without a kidney transplant.
“I’ve always felt kind of restricted with everything that I have. I would love to be able to do more and feel like a better person overall.”
Now, she’ll get that chance, thanks to her new hero; her uncle Mike.
“We have a kidney.,” said Lindsey. “Originally, I got tested and I was a match and when I called him to tell him I was a match he said no. and he said, she needs you to take care of her and I’m going to get tested.”
Speaking via Facetime with Mike, Lindsey’s older brother explained his decision to donate one of his kidneys.
“From the very beginning when I started the screening process, my internal prayer was please let this be something I can do. Please, Lord give me the opportunity to donate this kidney,” said Mike. “Even if it was a stranger I would do it, but given that it is my niece who I love very dearly and my sister who has been a rock to me in my past when I needed her, I was very excited. Now, I wish they would just hurry up and do it.”
The surgery is loosely scheduled for July 11th. It’s already been pushed back once because Kenzie got an infection. Three teams will come together to make the transplant happen; a team in Florida, Kenzie’s specialist in New York and her urologist will assist due to her birth defects.
The mom and daughter will spend three months in New York post op. Lindsey, a full-time photographer, has been fundraising for almost a year. Mackenzie’s Cure, a Kidney for Kenzie, the Go Fund Me is called.
“It’s lifesaving in the fact that you have to have kidneys in the fact that everything it controls but it’s also life-changing.”
Kenzie realizes how lucky she is to have not one but two donors willing to save her life.
“It’s pretty incredible that something like that could happen to me, a teenager.”
Kenzie said, although she’s scared of another surgery, she’s looking forward to having a normal teen life and leaving her strict dietary restrictions behind and return to her and her mom’s colorful life.