Being born with a genetic condition is a hard pill to swallow. The chance of a child being born with one depends on a number of things, but oftentimes, a defect can happen when only one parent passes along the gene for that disease.
The woman in the following story suffered this unfortunate fate, and she’s been forced to live her life with failing kidneys. But when she never received a call after being on the kidney waiting list for two years, she decided to take matters into her own hands. Her story is serving as an inspiration for others…
Living With Alport Syndrome
Born with a genetic condition called Alport syndrome, Maria has experienced progressive loss of kidney function. For the past 12 years, she’s lived with a kidney after a successful transplant, until her doctors told her she needed another one.
Taking Matters Into Her Own Hands
Maria put herself on a kidney waiting list, but after two years of not receiving a phone call, she finally made the decision to take matters into her own hands. Being that there were still three pages of names ahead of her on the list, she knew she had to act fast…
“Share Your Spare”
Maria Boyle remembers the day she decided to advertise her need for a kidney transplant through a sign on her car. The sign on the back of her car window reads: “Share your spare,” and it included her personal phone number. Her sister Marissa also sported the sign on her car, saying “I don’t know what I would do if she wasn’t here tomorrow…I don’t know.”
In Search Of A Kidney
After putting up her sign, people have signaled Maria from their cars telling her that they love it. But after seven months of driving around with the advertisement, two people finally stepped forward to offer their kidney. They called Maria on the phone and told her they were interested in helping…
All Part Of The Process
But the first woman who was tested wasn’t a match, and then a man filled out paperwork to begin the process, but he never followed through. Maria understands how much this is asking of someone so she completely understands the notion of getting cold feet or having a change of mind.
Children To Raise
In the meantime, Maria focused on her three children, as she couldn’t afford to be absent from their lives. “I remember with my first kid, I just wanted my daughter to get through high school, and she did, and now she’s in college…But, I still have two more kids.” Now, Maria was living with no kidneys and she was on dialysis, which allowed her to live a productive life while she waited for a transplant. Still, dialysis wasn’t a long-term solution…
What Is Dialysis?
Since the kidneys are responsible for filtering waste products from the blood, dialysis is a procedure that is a substitute for many of the normal functions of the kidneys. Types of dialysis are hemodialysis and peritoneal dialysis. Hemodialysis uses a machine and a filter to remove waste products and water from the blood, and peritoneal dialysis uses a fluid that is placed into the patient’s abdominal cavity to remove waste products and fluid from the body. Maria was on dialysis to extend her life, but she hoped it was only temporary.
While she waited on the news of a donor match, Maria remembered the last time she got a phone call telling her a kidney was ready for her. She recalls the feeling she got last time during that phone call: “You feel so happy for yourself but you also know there was something sad that happened in the world and that day you know there is a family grieving.” Finally, after her “Share Your Spare” sticker went viral, a couple of news sites picked up Maria’s story…
One of them was Fox 2 News and they shared Maria’s story about taking a novel approach in search of a kidney donor. Once the segment aired, 20 people reached out to her wanting to donate a kidney, some of whom lived across the country.
Maria was humbled by the overwhelming response and her family created a Facebook page called “Maria’s Kidney,” where people who were interested in donating or learning more about the process can reach out. One of the posts on Facebook read…
Dozens Of Phone Calls
“I also had a call from Alabama and get this…interest from Germany!! All I can say is that this has got to be my year!” Maria wrote. Then, on January 11, 2018, Maria got a call from a potential donor named Jeremy. She said he’d been in contact with the medical center, Barnes Jewish, and he just needed a doctor’s visit to get checked.
Jeremy called Maria and said, “I called to keep your spirit up and to continue to let you know I’m serious about this! Once I set my mind to something it’s going to happen!” At that moment, Maria knew that Jeremy was the real deal! On January 20, she shared an update…
Keeping Her Spirits Up
Maria said that Jeremy was totally cleared by his doctor to donate and that he texts her every day to cheer her up, say “hello,” and shares updates with her. Maria posted, “I’m feeling pretty good, besides severe low blood pressure (the kidney regulates that) but I’m in super duper positive spirits and it’s just a matter of time before I find out who my donor will be!”
Sharing Great News
Ten days later, on January 30, a Facebook post read: “Well the best birthday present I could have ever had is happening today. Jeremy Brown was cleared by his personal physician to be allowed to donate…I am thrilled to pieces…You guys wouldn’t believe this guy, it’s like he’s sent straight from heaven.” Maria was convinced that Jeremy would be her donor, but, in an unexpected turn of events…
Change Of Plans
Jeremy Brown was just a few weeks away from his surgery date when Maria received a call that a kidney was ready for her and she needed to get to the hospital immediately. She didn’t post much on Facebook after that as she was in recovery, but on March 5, she shared an update.
“I came home Friday evening after it took the hospital 2 days to get all of my care and machines in order…Tomorrow starts a new week, I know things will get better every day it just takes time…I don’t know what the future holds for this kidney and the fear that it won’t ever work but I always remember this simple quote that they had up a while in boot camp, ‘This to shall pass.’” But, what did Jeremy wind up doing with his kidney?
It turns out that Jeremy is still going to donate his kidney in Maria’s name. “He will either be put in the paired exchange program or he will be an altruistic donor to just somebody in need,” Maria explained.
She added that she’s trying to figure out if she will ever need to get another kidney or be allowed to, and she wonders if she will be able to receive Jeremy’s. “Either way I’ll get a kidney from a live donor because of Jeremy’s dedication to being a donor.” However, if the surgical team said no to her…
Jeremy would be prepared to give his kidney to someone in need. On July 9, 2018, Fox 2 News shared an update that Jeremy wound up undergoing the surgery and gave his kidney to a stranger in need. It was donated in Maria Boyle’s honor.
There Are Still Good People In The World
“It just makes me happy there are still people in society that are good. People, you know, hear about the bad, but I have all the good calling me,” Maria said. Despite the fact that it wasn’t always this way for Maria, she can attribute her reality now to her hard work and dedication in taking control of her own life, even if doing so was as simple as putting a sticker on her car.