Editor’s Note: Over the past month, The Voice-Tribune has dedicated much space, time and effort to help Talia, a 12-year-old Louisville resident, who is on a mission to raise awareness about the importance of signing up to be an organ donor. That’s because we support her cause and we’re hoping you will too.
It only takes about a minute to sign up online. Or, you can meet Talia and her friends at the finish line of the Louisville Sports Commission Half Marathon and Pure Tap 5K on Nov. 12. If you want to participate in either race, visit www.lscmarathon.com.
In this week’s issue, we give priority to Talia’s Love 4 Life Project and have done something unprecedented for The Voice: We asked the seventh grader to pen the top cover story.
Since she has been treated like any other writer – minus the hugs that end our meetings – her words are edited, but only mildly. The goal was to get Talia to use her voice for a cause she believes in with all her heart. Here, she has.
We hope you’ll not only take a moment to read what she has written, but we also ask that you take the time to register to be an organ donor at the races or by signing up at www.donatelifeky.org.
– Angie Fenton, Managing Editor
Talia’s Love For Life Project
Her name is Anna, and she is not only my sister’s best friend, but she is also what inspired me to talk to people about organ donation and to start Talia’s Love 4 Life Project.
When I was in my third grade year at Louisville Collegiate School, I met a girl named Gracie who had a sister named Anna. Anna and my sister, Tamar, became BFFs (that’s “best friends forever”); Gracie and I did, too.
Not long after that, I found out Anna had a disease called biliary atresia. The doctors think the virus that attacked the biliary system of her liver caused it. They did a five-hour surgery called the Kasai procedure to prolong the life of her liver and to keep her from needing a transplant as long as possible. Now, a transplant is the only cure.
When Anna comes to our house, she always brings a cooler full of medication with her and has to make sure she remembers to take it when she spends the night. Even though I’ve known about Anna’s condition for quite a while, it still really surprises me that a girl with such a big, loving heart could be diagnosed with such an awful disease. If it were my sister, I would be scared that something bad could happen to her and it would break my heart.
My sister, Tamar, thinks the situation that Anna is in is really sad, but she has hope for her. She also says that they are best friends and that Anna can depend on her for anything.
“When Anna gets her liver transplant, I will be right at her side,” Tamar told me. Tamar loves spending time with Anna and would be heartbroken if something bad ever happened to her.
Gracie loves her little sister like I do mine and even though we all hang out like any other friends, there’s always Anna’s illness hanging right there, and that’s not easy to deal with, especially for Gracie. “It’s hard because I’m really worried about her,” she told me. “Anna has a life-threatening disease and needs a life-threatening operation to get better.”
I asked Gracie about how she deals with it and how she supports Anna. “I deal with it by trying not to think about it because honestly, the realization of what Anna has to go through is so scary.”
The doctors have told Gracie and her family that Anna could get a call any day, and when they get that call, Gracie’s entire life will change. “I support Anna by going to the doctor visits and trying to be encouraging when she is down,” Gracie told me, “but I wish that I could trade places with her in a second.”
Even though Anna has friends and family who love her, I wondered what she feels like about all this. I asked her if she knows a lot of people in the same situation. “I only know one adult, and met her at a liver walk,” Anna said.
She also told me her doctor experiences are going OK, though every time she goes to the doctor, she gets shots, and they hurt really bad. Sometimes they take a lot of blood tests in her arm. She said that those hurt a lot, too. She also told me that she takes medicine every night and has been doing that since she was 5 weeks old. She takes five different medicines.
Anna recently got to have a fun experience, thanks to Make-A-Wish.
“It was really fun because I got to meet Taylor Swift,” Anna said. “She was very nice. I also felt really, really special.”
I now realize how serious the matter of organ donation is. After reading this article, I hope that you do too, and if you aren’t an organ donor, please become one. You never know who you are going to help.
Tune in to Terry Meiners on 84WHAS between 3:30 and 4:30 p.m. Friday to hear Talia talk about her Love 4 Life Project.
Sobering facts on the need for organ donors
By ASHLEY ANDERSON
Today in Kentucky there are more than 1.1 million individuals who have joined the Kentucky Organ Donor Registry. Unfortunately, that 1.1 million isn’t enough to save the thousands of lives awaiting an organ transplant each day.
According to statistics from the Kentucky Organ Donor Affiliates, at least 112,000 people are currently waiting for an organ transplant in the United States. More than 1,000 of them are age 10 years or younger.
On average, 134 people are added to the nation’s organ transplant waiting list each day, which is equivalent to one person every 11 minutes. And approximately 77 organ transplants are performed each day in the U.S., yet an average of 18 people die each day while awaiting a life-saving transplant.
The statistics are alarming, but there is still good news. For every one organ donor, 50 or more lives could be improved or saved, which is why it’s so important for individuals to consider adding themselves to the donor registry.
“A lot of different organs and tissues are helpful in saving lives,” said Amber McGuire, Minority Education Coordinator at KODA. “Tissue includes bone that could be used for spinal fusions, skin for burn victims, corneas used to restore sight.”
By becoming an organ donor, you can significantly impact others’ lives in a variety of ways. Often times, though, people forgo the opportunity to add their name to the registry when given the opportunity because of fear or misconceptions about organ donation.
“The state of Kentucky has a first-person consent organ donor registry,” McGuire explained. “First the patient has to be clinically brain dead. There has to be some type of anoxic injury to the brain, whether from a car accident, massive stroke or aneurism. We encourage people to have conversations with their family and let them know they’ve made the decision (to become a donor).”
When organs become available from a donor, the turn-around for transplanting those organs is quick. Doctors have only four hours to transplant a heart or lung, with kidneys allowing the longest amount of wait-time at just 72 hours.
No one likes to think about dying and what will happen afterward, but by becoming an organ donor you can guarantee you will leave behind an even greater impact by helping save the lives of those still struggling to survive.
Twelve-year-old Talia believes in the importance of becoming an organ donor, and she’s asking you to consider joining the 1.1 million Kentucky residents who have already added their names to the donor registry.
“It’s pretty amazing the outreach that (Talia’s) doing to help her little sister’s friend who’s on the waiting list,” McGuire said. “It’s amazing a young girl is willing to write about something that is so important to her. I really admire her for taking the initiative to do something so positive in creating awareness and helping to build the registry and getting more people to join.”
To register as an organ donor, go to www.donatelifeky.org.
Category: Cover Stories