Landyn - Vacterl
Meet Landyn! He will be turning 8 in October and is currently in 2nd grade. His mother tells me that Landyn has a huge, hilarious personality. His mother also tells me that Landyn absolutely loves learning and he loves school.
Landyn was born with a rare disorder called vacterl. She tells me that only 10% of the world have this disorder, meaning that’s only about 600 million people. Although that may seem like a large amount to you, it’s easily nothing compared to 7 billion people. Vacterl is a disorder that affects every part of the body. On top of having vacterl, he has two other disorders. Landyn has something wrong with his brain, right arm and hand, back, stomach, bladder, kidneys, heart, lungs, one of his ears, his hips, legs, private areas, and his bottom. He has had to go through 43 different surgeries, and is about to go through his 44th! That’s a crazy amount of surgeries and it’s even more heartbreaking to know that he’s only 7 years old and has to go through so much. Landyn is such a strong boy and I know he has the courage to go through so much more. Landyn’s mother tells me that he has passed away 60 times on the operating table, in her arms, and at home. Landyn also deals with severe asthma. The doctors tell the mother that Landyn has until he’s 13 before he passes away and that kids don’t usually survive long after that age. The mother tells me, “He is extremely rare and there is not one kid like him in this whole world. He is kind, funny, sweet, caring, loving, and overall amazing… He has the kindest soul in the world.” I was absolutely heartbroken to hear about this boy and everything he has gone through. Can you imagine having your child pass away 60 times? That’s extremely devastating and I pray that Landyn gets better and I also pray that no other mother has to face this. I don’t think I could ever be strong enough to through what Landyn has gone through. The fact is, Landyn is a brave young man and he’s stronger than we will ever be. He has extremely strong will and I know, and his mother knows that he will never give up and he will keep on fighting. He has some brain damage, but Landyn’s mother has no idea to what extent. Landyn’s heart is tilted, has 4 holes, some things in his body are too large and some things in his body are just too small. “I just found out that the right side of his heart was not getting blood or oxygen and is deflating so we are discussing another open heart. He was born with 2 lungs but during an emergency open heart when he was younger that had to put a stint in and it was too large so it cuts off blood flow to one lung so now he has just one that’s covered in severe asthma. He is missing a bone and a thumb in his right arm so it’s ⅔ shorter than his left and his hand is turned and only has 4 fingers. He was born with no butthole so they had to build one but he doesn’t have the muscles to control it so he has a button in his stomach that I have to hook him up to flush him out… His left kidney has cysts all over it so it’s dissolving in his body.”
When the mother was pregnant with Landyn, she didn’t know anything that was wrong with him. She knew that one of his kidneys were bad and his heart had a couple of holes. “2 days before I went in to have him, I found out about his arm. After he was born, I was only allowed to hold him for 30 seconds and then he died and they took him. That’s when I slowly started finding out more and more wrong and to this day I am still finding out more. My first reaction when I saw him especially his arm and hand was ‘wow, he’s so beautiful but that’s so different like it before.’ I was 19 when I had him. But he was so beautiful. The more I found out the more scared I got because I knew my chances of growing old with him were slim to none. I knew that I had to be strong for myself for him.”
The mother told me that was hard and some days are worse than others. She treats everyday like it’s his last. She says, “It’s extremely lonely because he’s so so rare that it’s not like I have other moms to talk to and relate to. It’s just me. It’s terrifying. And it’s exhausting, stressful, emotional, draining. I do everything by myself. It’s just me and it gets overwhelming it’s hard to control my emotions and do what needs to be done without breaking down. My initial reaction to Landyn was he needs me it’s time for me to grow up fast and do what I need to do be the mom he deserves and needs. I got chosen to be his mom for a reason and he needs me. It’s definitely a very hard job. But so worth it. The hardest part was sitting in the NICU next to his bed for 97 days and not being able to hold him but only be able to touch his toes. Everytime they attempted to let me hold him he would pass away. It’s been a very long journey.”
Landyn’s mother tells me about how he gets bullied at school. Every year, it’s the same. She told me that the year before, he got bullied from a kid that called him flipper boy and made dolphin noises because of his arm disability. Landyn’s mother has talked to the counselors and administrators at the school, but they have not been taking action and she told me that they take forever to do anything about the problem. They won’t even let the mother talk to the kids. She can’t put Landyn in private school, because she doesn’t have the money and Landyn cannot be homeschooled because they said with his depression and personality, he won’t be able to survive homeschooling. However, his mother informed me that she would soon get a job at the school and be closer to her son.
She has been struggling financially and her being a single mom does not help. She tells me that it’s hard for her to keep jobs because Landyn constantly needs surgeries and to see a specialist. She’s always in and out of jobs. I suggested she get aid from organizations that help with funds, but unfortunately, there are none in her town.
When I asked her what advice she would give to families that may have children with this disorder, she said, “I would tell them that it’s okay to cry, scream, feel defeating, feel alone, and always question why. Give yourself one day to break down a week. Once that day is over, pick yourself up and become the strong fighter that you are. No one will ever truly understand what you are going through. It’s very difficult to stay strong and not become bitter but always try to find something that makes you smile and laugh daily and always try to stay positive. Even though what we are going through as parents to a child with a disorder, there is always someone out there dealing with much worse. Spend everyday with your child like it’s your last and always be thankful for the memories that you get with them. It’s not easy but it’s so worth it. Your child looks up to you for strength and you are the reason they are still here and fighting but that does not mean that you are not allowed to break down. It’s how you pick yourself up, that matters. Stay strong and keep fighting. You are a true inspiration.” Honestly, that is such a beautiful piece of advice. I think it should apply to all families. That no matter what, never, ever give up on your child. Your child will depend on you to be strong for them. If they see you not giving up, they will fight to not give up as well. Landyn has been through so much and it’s amazing to see such a supportive and loving mother like her. Not a lot of people would want to deal with what she is going through and it’s honestly so inspiring, what she’s doing. Not everyone can stay strong, like she is, when going through something like this. I absolutely loved interviewing her and it made me believe that anyone can be strong in hard situations.
Landyn would like to tell the world, “Everyone is different. Some of them, you can see the difference and for others you really can’t or won’t be able to, but we really are all unique, so please stop judging others. Don’t judge a child just by the way they look.”
Landyn’s mother has made a Facebook page for Landyn to have fans, to follow him and his journey. His Facebook page is “Landyn is Our Hero.” Please follow to see updates on Landyn. His Instagram page is @landynb27.
If you’d like to learn more about vacterl, check out the links below:
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- Anisha Yellamraju