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Life with Reggie

Being a Sibling to a Child with Special Needs

Reggie at his 16th birthday party.

Everyone, say "hello" to Reggie. He is my 18-year-old brother, and yes, he has Down syndrome. And, since October is Down syndrome awareness month, what better way to make you aware than to show you this cute little guy and tell you a little about his story?

You see, Reggie was born with kidney disease as well as having DS. It's been a rough road, mostly because of medical issues and learning limitations. But he doesn't let that stop him from shedding his light to everyone he meets. But let me back up.

When Reggie was a newborn, he had to be put on peritoneal dialysis, a type of dialysis that is performed every night thanks to a cycler and dextrose solution that runs into his abdomen and cleans his body of toxins because his kidneys aren't doing the job. He's also had to deal with the odd looks and snide comments made by those who don't understand his mental condition. DS IS NOT CONTAGIOUS! This is a concept I constantly wish people would understand. DS, also known as trisomy 21, just means that a child has three of the 21st chromosome, which makes their learning slower than others. That's literally all. They're not stupid; if anything, they're smarter than most. They just have a harder time grasping concepts than those who have "perfect" DNA.

Anyway, at five years of age, Reggie was given a kidney from a small child who had died in a car accident. We received the phone call at 2 AM. Mom and Reggie and his dad had to leave immediately for Winston-Salem, North Carolina (about a three hour drive from our home), and I was left behind to continue to go to school. You would think that after the kidney transplant everything would be good, right? WRONG! After that, it was like doctor's appointments and hospitals were his life. We barely had time to unpack bags because we were going to Winston-Salem so much. Not to mention monthly blood work appointments, at which every possible thing was looked at. This was to make sure his kidney was still functioning properly and that nothing was staying in his system that shouldn't be.

A few years ago — no, I don't quite know when — doctors found that Reggie's bladder wasn't clearing the kidneys out like it should be, which was a big problem considering he only had one working kidney. Catheters were not an option because his urethra was too small. The bladder problem plus the anti-rejection medicines he was on caused a virus in his kidneys called a BK virus. The only way to cure it is with a functioning bladder and infusions into his veins once a month. So, they started with the bladder and did the next best thing to empty the bladder without having to keep him sedated. They created a "stoma," an opening in his abdomen right above his groin that my mom had to stick a catheter in, at the time, every three hours. Everything was going well with this process, until...Reggie got sick two years ago this past August with double pneumonia. To most, this wouldn't be a big deal, but to a kid who is on immunosuppressants to keep his body from rejecting his donated kidney, it's not good. He was literally put on life support and into a medically induced coma because he couldn't breathe on his own. Doctors told us there was a 50/50 chance he would make it. It was all up to him. By the grace of God and my little brother's strong will to live, he made it through... but...

Because of the medicine he was given to fight the pneumonia, his kidney began to fail again. It was a slow, downhill decline, but downhill nonetheless. As of December of last year, Reggie has been back on peritoneal dialysis. Because of the infusions I mentioned earlier, the BK virus has finally left his system, which means he's now on the active list for a kidney transplant. I have been tested and am a blood match. I've been through all the testing and have been cleared to give him a kidney. BUT (yep, there's another one of those pesky "but"s), because this is his second kidney transplant, the doctors have to be extra careful. They say that Reggie's body has built up antibodies to attack foreign objects in his body (i.e..someone else's kidney). So, right now we're waiting for the antibody tests to come back. If everything goes well, I will be getting scheduled for my first major surgery in 26 years. I'm only 26 years of age. 

Even though this post has been mostly about his problems, it goes to show you that even with medical issues and learning limitations, everyone deserves a shot at life, and they deserve love. If you have any questions about Reggie or this process, please feel free to ask. I will definitely post about the journey and keep everyone who wants to read up to date. I'll also post another story a little more detailed, it's just late and I have to work in the morning. Thank you for reading this post. See you all in the near future!

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