Leighton returned to Riley Children’s Hospital on May 18, 2021 for a heart catheterization and biopsy. He will stay at the hospital until a heart becomes available. He is on a new treatment and his listed status was raised from 2B to 1B. He has experienced some symptoms such as issues related to the PICC line, heart rhythm issues, and swelling.
Leighton has been posting daily on FaceBook, usually a relevant Scripture, sometimes a photo or video. He has made friends with hospital staff, other patients and their families. God is blessing him and blessing others through him.
2015 Ten Year Anniversary Update. by Leighton Akins:
Around ten years ago (back in 2005), I was diagnosed with Restrictive Cardiomyopathy. This is a rare heart disease that I would’ve died from if I didn’t get a heart transplant. I was only 5 at the time, and didn’t have any idea what was going on. All I knew was that I was going to the hospital a lot and couldn’t keep up with all my other friends. Thanks to Riley’s Hospital for Children, I would be able to get a transplant, but it would still be at a very high cost. We clearly needed help to cover all the expenses, and that’s exactly what we got. Our church, local newspapers and TV stations, and many restaurants and transplant organizations stepped up to this challenge. Of course, God was the biggest factor, but we are very grateful to all the loving people that made my transplant possible.
I got my new heart on October 16, 2005 (my mom’s birthday). I still didn’t quite understand what I was going through, but I was scared on that day for sure. However, I had a miraculously good recovery, and I was in the best shape of all the transplant children at the time. I got out of the hospital very quickly. Before I could go back home, our house needed to be re-done in order to get out all the molds and other germs that my new heart couldn’t handle very well. That was done by many generous people who took the time out of their day to help us. I got to go into our “new” house around Christmas time, and my dad made sure this holiday would be special for my first day back by giving us lots of presents. I had to stay locked up in our house for a couple months to let my heart rest. After that though, I was basically a normal boy! I played on a basketball team a few times, and I could keep up with everyone just fine.
The doctors are pleased with how my heart is doing, and so am I. I’m doing well in school, and exercising like a normal kid would. I definitely want to be involved in sports when I grow up, but I’m quite interested in filmography as well. I believe God has blessed my heart, and I also think I won’t have a lot of problems with it moving into the future. With that in mind, I am mapping out what I do in my everyday life without worrying about what will happen. I have a very fun life, and I intend to try and keep it that way!
A New Hope
Leighton is my nephew.
In June of 2005, a doctor at Riley Children’s Hospital determined that little five-year-old Leighton needed to receive a heart transplant.
My auntlizzy website was created to initiate an art auction in 2005 as our family and friends raised funds for his transplant. This is the reason my art and Leighton stay connected on this site. This is why my website is titled auntlizzy.
Leighton is now fourteen in 2014. In January and February of 2013, he needed a series of Gamma globulin infusions. The infusions were stressful and the results were disheartening. However, in April, Leighton was sent for a follow-up heart cath which came back with a very happy report. Leighton is once again doing fine, and we are all grateful to God!
He has been very brave through everything and is trusting God. He wanted to make a brief comment for himself.
April 10, 2013. Letter from Leighton:
Hola, my name is Leighton. I have had a great life so far. The check-ups and biopsies make me anxious though. I do and don’t do things that normal kids do. I’m interested in basketball, I do school :(, I play video games, etc. However, I take lots of pills (and I’m pretty sure regular kids don’t do that). I had a biopsy recently and (thank God) there was a good report. I get anxious that there will be a bad report saying I’ll have to get another transplant! Thankfully, that hasn’t happened yet. I’m thankful for all the people who prayed for me and donated to help pay bills (Aunt Lizzy is one of those people). I have so much to be thankful for.
Looking Back Over the Past 8 Years
October 2006. Letter from Leighton’s Dad:
Wow, it’s almost been 1 year since Leighton’s transplant. That’s hard for us to put into perspective. It seems like this is how life has always been.
Sorry for such an incredibly long time since my last update. Life has been unbelievably busy. This year has past so quickly.
Leighton and Luke are doing so good. Leighton is going down on Tuesday for his 1 year biopsy and heart cath. Leighton (and us) are kind of anxious about this, but Leighton has done so good with all of this. God has really worked a miracle in Leighton’s life. He used to be almost out of control with needles and check ups, but now he is so brave. He even plays around with some of the doctors and nurses even when they are sticking him. He likes to know everything that is going on and even watches as they draw blood. (I can’t do that).
This last Saturday, Make-A-Wish got a crew of workers around to build Leighton’s wish, a playground. It was such a fun time! We got rained out at the end, so they are coming back this week to finish up. I will include some pics.
Thanks so much for all the prayers and support! I am telling you that all of you made a difference in our lives. There is no way to repay all that has been done for my family except for all of us to always stick together and help each other. It is so impressive to see how God worked in all of this.
I want everyone to also remember that if you know a family that has a child with a transplant need, please get them in touch with me. There is so much that is out there to help, but it is hard to get started. Lisa, Aunt Lizzy, and I have become pros of sorts.
Also, remember to pray for Leighton’s upcoming check up!
Leighton’s parents had already lost two little boys because of heart disease. Leo and Lyndon died at eight years old. Their third child, Leighton, was able to receive a heart transplant at a young age. Their youngest child, Luke, has not been diagnosed with heart disease. Leighton and Luke are amazing brothers who display a loving and respectful character as they grow together into young men.
Volunteers have raised funds that are needed to assist Leighton with his transplant-related expenses and post-transplant care.
Click here for old photos on flickr.
Archived photos of fundraisers, Riley visit and many friendly faces.