Warriors of The Week

Clayton was born November 22, 2017 to Bradden and Kayla.  He has two of the biggest cheerleaders for siblings, his older sister Brilee and baby brother Knoxson. When I (Kayla) was 20 weeks pregnant we had an abnormal scan and were sent to maternal fetal medicine to do some more scans and tests. The doctor came in and had a list of issues Clayton was facing. Two holes in his heart, extra tissue on his neck making them think he had down’s syndrome and missing radius bones in both arms. After testing and lots of waiting his down’s syndrome test came back negative, we had to play the waiting game about his heart and the missing radius bones were caused by TAR syndrome. Our doctors were about as clueless as we were so off we went looking for all the information we could find to help our sweet boy. Finally we went in to have him but when he came out he wasn’t really breathing good. I got a glimpse of his face and a couple of pictures then off he went to the NICU. He has been fighting and overcoming everything that stands in his way ever since. He has battled hearing loss, failure to thrive, developmental delay, leg issues and so much more but he always fights with a smile on his face.  Countless platelet transfusions, six surgeries later and a pair of failed leg braces and Clayton has just started standing up by himself. He will only be 3 years old in November but has taught us everything we need to know about being strong and courageous!  

Kaleb Dorr was born August 13, 2007 to Dennis Jr. and Kimberly Dorr. He has one brother, Bailey, and one sister, Maci. Kaleb was born with a recessive genetic disorder called Thrombocytopenia Absent Radius Syndrome (TAR Syndrome) which is characterized by low blood platelets and missing the radius bones in both arms. Over the years, Kaleb has endured countless plasma transfusions, 13 surgeries, 122 nights in the hospital, and still has so much more to come. Throughout all of this, he has always had the best attitude. Kaleb is charismatic, witty and a determination that won’t quit. Kaleb has learned to rope and has competed in many dummy ropings across Oklahoma and in Texas and Nevada. He is learning to rope from his horse, Shorty. Kaleb has been a member of the Hot Heels Hot Shot team for 1 year and was just recently named to the Priefert Jr. Elite Rodeo team. He loves to participate in the Ellington Preschool Western Days by showing the kids and teachers how to rope, this year he even taught Principal Flemming how to rope! Kaleb doesn’t realize that people look up to him, all he knows is that he tries hard and does his very best. His drive and determination will take him far in life.
In July 2019, his family learned that Kaleb’s knee joints and tibial torsion were worse than they ever could have imagined. They learned that his joints are not aligned correctly, he is missing some tendons, he has ligaments grossly displaced, and one knee cap in his thigh. They were told by more than one doctor if they did absolutely nothing for his legs that in the next 3-5 years the pain would be so unbearable that he would be wheelchair bound. For such an active kid, this was not an option and they began their search for the right doctor. They traveled to Louisiana and Florida talking to doctors at the top of their profession and decided that the Florida doctor had the best plan of action. They have explained to Kaleb that these surgeries are going to be painful and the healing process will be long yet he still is so ready for this uphill battle. They have to plan to be in Florida from July to October so that he can have the surgeries begin to heal and begin therapy. Once they are back home therapy will continue until he is, with God’s will, back to 100%

Hi, my name is Faith, and I was born with TAR Syndrome. It’s a shortened version of thrombocytopenia with absent radius – it’s a rare condition. I have had some reconstruction surgeries on my arms, though I don’t know a lot of my medical history. I’m 25 years old now. I’m not sure how to say what I want to say, but I’ve grown as a woman. When I was younger, I was bullied and I’ve tried to prove them all wrong. I used to play the trumpet, and I’ve recently taken up painting. Painting is difficult, but probably the most therapeutic thing I’ve tried. My best friend loves my art and encourages me to keep painting because she loves the joy it brings me. Living with TAR Syndrome has been hard: mostly learning how to adapt to things. I have adapted to cooking, doing up the button on my jeans, doing laundry. It is hard to do the “normal” things in life, but that is truly okay! I have grown into a strong independent woman and I can do anything. I honestly don’t think I’d be who I am today if I didn’t have TAR Syndrome. Yes, some days are harder than others, but that’s okay – life isn’t easy! I’m happy with who I am and who I am becoming. I’ve learned to just turn my head at rude comments in public. It still hurts some days, but I’m strong and I just hope people will grow with me. Because I’m not just my limb difference.  

Hi, my name is Victoria and I have TAR. Being disabled in this world is interesting. There are things that are really hard and things I otherwise. When I was born in October o1999 I wasn’t expected to live through the night, I did. I was in the NICU for ten days after birth. I have to say, thank you, to a NICU nurse who had seen TAR 20 years previous, when she was a nursing student. It was because she recognized TAR that I lived through that night. She had told my Nana that I would need love and prayers to survive. That is exactly what happened, prayers and love have kept me alive, their love has motivated me to fight when I want to give up.
         Growing up, it was doctors’ appointments, therapy, and surgeries. I am twenty years old and I have had over 20 surgeries before I turned 20. I have had thousands of transfusions and more to come. The longest time I have never had a transfusion for was 3 years and recently ended for two more surgeries. I am fully recovered and haven’t had a transfusion for two months post-op. Just because I have gone through so much, it doesn’t mean I am not happy and full of life. I don’t take anything for granted, because I have seen how precious life is. I work hard for my independence. I now am living by myself, in a city where my parents live hours away from. I work, when there is no healthcare stuff in the way. I go to school online, because this is the best for me and my health. I am going for my degree in communications so, I may be a voice for others like me. The people who don’t have a voice.
        I was able to go to a national’s competition at 18 and win gold. I was so happy and that I was given a platform to use. I saw a goal that I could go farther and use my platform with sports. I am training for more, more competitions, and using that platform to advocate for others. I hope to one day advocate for TAR full time. To bring more awareness and that we are all uniquely ourselves. I want to tell the story of those with differences. I want to motivate people and uplift them, so they know how unique and wonderfully made.

This is Connor! He’s 19 months old and has short arm TAR syndrome. We found out there was a concern with him missing arm bones when I was 32 weeks pregnant, and in addition to that he was growth restricted and had stopped growing at 30 weeks. He was born at 3 pounds 12 ounces, stayed in the NICU for 9 days, and then came home on a hospital monitor. It was a really scary time for us as first time parents, not knowing what to expect and trying to balance doctors appointments and therapy sessions.

He needed blood transfusions and had to go for blood work weekly until he was 6 months old, but since then we’ve been so lucky that his levels have stabilized and he hasn’t needed one since. He also has bone conductive hearing loss because his ear canals are too small to let sound through clearly, so he wears his hearing aids on this headband and handles it like a champ! We’ve been doing weekly PT and OT since he was born, and he also now works with a speech therapist every week.

This little man stays busy but is always smiling and the light of our lives. He’s always figuring out how to do things on his own and blowing us away with his perseverance and strength. We are so lucky to have him and couldn’t imagine our lives without him.

When we found out about Henry’s diagnosis, it absolutely broke us both. I remember walking to the truck out of the high risk doctor’s office feeling more numb than I have in my whole life. I threw up in the parking lot, not from nausea but from panic. My husband and I both cried our eyes out as we drove around to clear our heads. We called our close family members and explained what little we knew at the time. How in the world are you supposed to raise a child with no arms?

First, you cry.  I don’t mean like small tears. I mean like mascara running, dry heaving, full on sobs. Ugly crying. You kick and scream and say why me? Henry is our first child, and he was definitely a surprise. A pleasant, amazing, giggly one, but a surprise none the less. Second, you question everything. I personally brought every single ultrasound I had and made the high risk doctor point out what I thought were arms. I was chasing shadows and clinging to hope that there was mistake. I distinctly remember sitting there in the doctor’s office trying to hold my breath thinking that would give them a clearer picture on the high resolution ultrasound. At first when I looked back I felt so guilty for feeling like I did. I repeated over and over, “how was I going to be a mom to a little boy who needs more than I can give him?” Now I realize I wasn’t worried about his arms, or lack thereof, at all. I was worried about our ability to care for this amazing child.

Next, you learn to adapt. One of my biggest things when we found out about Henry’s arms was his clothes. Why does EVERYTHING have sleeves? I don’t sew well. Sure, my best friend is a genius seamstress. But what about me? It hit me like a freight train. I didn’t sleep. I didn’t eat. I screamed and cried and acted like a crazy person. Then I found our amazing support system in a TARS Facebook page. These people gave us hope. They gave me a life raft to hold onto when the waves kept pulling me so far under that it felt like it was almost easier to let go.

When I first came back to work I felt like a fish out of water. It was like everyone was walking on eggshells around me until I finally started talking about how I felt. I have been a 911 dispatcher for the past 6 years, yet the first time I picked up the phone I froze. I would have to leave the floor because I was sobbing every time I saw a sonogram picture of a friend. I spent hours upon hours researching at work, so thankful for a place that supported our family endlessly. With my husband being a paramedic, our whole world is public safety. So not only do we have an amazing team of medically trained babysitters, we have awesome friends that understand our platelet transfusions and endless doctor appointments.

For some crazy reason, we were chosen for this. It might not ever make sense to us, but it’s our reality. We had no choice but to embrace it! Henry is the most perfect baby in the world to us. The first time I got to see him with my very own eyes I was in awe. We created that! He was ours forever. These days I find myself staring at him when he sleeps. I cannot wait to see the person he grows into. Yeah there will be really hard days, but there will be really amazing ones too. Our mantra that we always use is, “No arms? No problem!”

At about 24 w​eeks​ of pregnancy with our second child,​ ​they could not see our babies left arm. We had 4 ultrasounds at 3 diff​erent​ places by this time and still no left arm. It was a major sign of concern for us, my doctor’s kept saying it was because I was overweight and the baby had been in the same position for every ultrasound. I still had not felt the baby kick, and just felt like something was not right. I mean I was fat for our first daughter and she kicked the mess out of me and they could see all 10 fingers and toes. So finally a doctor decided to send us to the Palmetto Richland Hosp​ital​ in Columbia an ​hour​ away from us, so I would stop worrying and they could get a better pict​ure ​with their more advanced equipment. When we asked if the technician could see her left arm,​ ​she responded ​you ​know I just saw the doctor in the hall and since your new I know he will want to pop in and say hi. What, the doctor never pops in for a routine ultrasound. We new something was wrong. He immediately came in and said yes it is definitely OI – osteo genesis imperfecta aka (brittle bone disease)  what!!! Of course I started crying​, ​we had no idea, and he thought our doctor had sent us there because they found the OI. Nope they didn’t!!  Brittle bone disease has different types, the one found in utero is usually fatal.  They gave our baby 2 w​eeks​ to live and set up the tour for there NICU.​  ​We spent w​ee​ks very sad, and did research online which made things worse for us. ​ ​At about 32 w​ee​ks our doctors practice took on a new partner! He disagreed with our doctor and said he didn’t know what to call it, but felt like our baby would have short arms. So we went from one arm, to OI, to short arms. Very frustrating, we asked for lots of prayers but let no​ ​one but our pastor know about all the changes. I had a C-section because if she had OI they didn’t want any bones to break in me giving birth,​ ​so a C-section would improve our babies chances! Once I had her she was immediately whisked away to the NICU . They got me settled in to my room, everyone but me had got to see our baby, and most family had gone home.  It wasn’t long before the doctor came in to tell us that once they pricked Olivia​’s​ foot with the vitamin k shot it would not stop bleeding.  Her platelet’s were very low, she had internal bleeding in her stomach, intestines,and a grade 4 hemorrhage in her brain. We had to sign consents for transfusions of blood and platelet’s,​ ​and surgery for a stint and a brovia​c​. They warned us she may not make it through the night!  Because of her physical appearance they new it was not OI but still were not sure what Olivia had. Our pastor came back and prayed with us! As the day went on, she made it through the surgeries. Our prayers were answered and a doctor who wasn’t even on the floor that day happened to be in the NICU checking his schedule and visiting on his day off. Everyone was doing research on Olivia, he asked to look at her. That doctor shared with the others that to him it looked like Olivia had TARS he had only seen one other case in his 30 years of practice. This was definitely a God thing!! Over the next 9 w​ee​ks she remained in the NICU it was a struggle many had only seen TARS in there medical books in school, and it being a teaching hosp​ital ​there was alot they didn’t know about TAR.  They had me breastfeeding her, which she had a reaction too, because of the milk protein allergy. Our time in the hospital was a learning experience for all of us!  We finally found Ela ​​care formula and it worked for Olivia, but she remained on a feeding tube for w​ee​ks after we had come home from the hospital, and still had the brovia​c​ in her groin as well. Making a long story alittle shorter,​ ​the next 3 years were rough, she was sick a lot and in and out of the ER and hospital every 3 to 6 months plus platelet transfusions every wk, but we were in Columbia twice a ​week​. Her brovia​c​ came out at,​ ​9 months and they put in a porta​-c​ath. ​ ​Which made baths so much easier and summer she could swim. Her platelet’s got worse, they had dropped 1,000 she was born with 9,000 and so they sent us to chop (children hospital of Philadelphia) to see a doctor there and become her patient. She had seen more TARS than our doctors and this way the could co-op treatment for Olivia and share info, because of ​HIPPA​ we had to be her patient too.

 It has been a very long and winding road, but she is a trooper, she’s resilient and positive always, she is our social butterfly that makes friends with strangers and tells her story better then we do, our God has gotten us through so much and given our baby girl a big personality and bright spirit to overcome what she didn’t get.  People adore her!! She had made our lives that much more special and I thank God everyday for giving her too us.  Our oldest has also been inspired by her little sister to want to work at a RMDH since we have stayed at so many and we tell our story every chance we get!! I have probably left out some stuff and feel like this is way longer then it should be,​ ​but I hope our story can help someone else and inspire ! Thank ​you​ and God bless​.​

It was just a normal 20 weeks scan. We had got through the first 20 minutes of it. Heart looked good, no cleft pallet, baby was measuring right and then came those words ” I’m really struggling to see babies arms” I had to ask her again what she meant and to check again as maybe baby was lying funny, 5 minutes later she said I’m really sorry I just cant see them. She went off to find a doctor to come and see us. I looked at Marcus as he held my hand and couldn’t say anything. Inside my heart was beating so fast that time seemed to stand still. We were walked past loads of smiling parents waiting for their scans and they could see I was crying and their faces dropped to the floor as they could tell we were one of those parents that had had bad news.  We sat across from two doctors and after been told that as our child had two limbs missing it most properly was a genetic fault and our baby could have many more problems. They wanted to re scan me that afternoon and then very matter of fact asked if we wanted to abort our baby. Those words hit both Marcus and I so deeply. Just 40 minutes ago we were so excited about seeing our baby and now we were been asked to kill it. We said that we would carry on with the pregnancy no matter what we had to face. On the way home Marcus and I sat quietly not knowing what to say to each other. That night after finding out our baby was a boy and that they couldn’t find a kidney and it didn’t look like he had any arms at all just a few fingers on his shoulders. I sobbed. I didn’t want my baby to have no arms. I didn’t want to have to go to scan after scan to see what else was wrong with my baby. I didn’t want to be that mum that people looked at and felt sorry for. I just wanted my baby to be healthy like our first little boy. I remember waking that night after finally getting to sleep and looking at the scan picture and realizing it hadn’t been a bad dream it was real my baby had no arms.
Over the next few weeks we had to answer questions after questions as more and more people found out about our baby. All of them looking at me with pity and tears in their eyes. It wasn’t meant to be like this. When your pregnant you expect it to be so happy and for everyone to be joyful instead so many wondered if we would even have our baby.  Each scan we went to something else was wrong. A possible bowel bleed, two holes in his heart, small legs the list went on and everytime we left feeling crushed and like no one could relate to how we were feeling. After many guesses of what our baby had we finally got the diagnosis of Tar Syndrome. I had never heard of it. None of our doctors had just our genetics doctor. I set about finding everything I could about Tar so that I might be able to help my little boy. I found a group on facebook that gave me the support I needed. They knew how I was feeling. It was such a comfort talking to other parents who had been through what we were going through.
The time came for our little boy to be born and we were so excited to finally meet our little boy. We were frightened that he wouldn’t make it but we just wanted to meet him and hold him so we knew he was safe and what we were fully dealing with.
I gave birth to Theo on 19th June 2019 by C Section and the operating room was full of people all wanting to see what our baby would look like. Out came Theo shouting and after a quick check over he was handed back to us and they were shocked to say he look so well and he could stay with me.
He had his platelets checked and they came back 47k everyone was panicking saying that was really low and Marcus and l looked at each other and said that’s really good for a baby with Tar. We got to go home 2 days later and I was still struggling to come to terms that my baby didn’t have arms. I loved him to bits but I felt desperate that I couldn’t make things better for him. I felt so guilty that I felt that way but it was such a difficult time for me. Over the next few days Theo struggled to feed due to having a small bottom jaw and we had a bit of bleeding in his nappy so we were back and forth to hospital. Theo’s platelets dropped from 47k to 37k in 5 days and we got ready for him to need a platelet transfusion. We really wanted our little boy to be ok and we couldnt believe it when a week later we went and he had made platelets not lost them. Two weeks later when we got the results back that he was at 87k we had to ask them again if the test results were right. Over the next few months Theo kept making platelets and when he got to 256k at 6 months old we just couldnt believe it. He has had alot of infections and we have really struggled with feeding and gaining weight but we have tried to relax and let him go at his own pace. Having Theo has made us so much stronger as a family.
Theo is the most beautiful little boy with a full head of hair.  All the worry and tears I had at the start seem so long ago. He is now 10 months old and he lights the room up with his smile. He is so amazing at finding ways to do things like painting with his feet and it teaches us that nothing is impossible. Theo will achieve anything he puts his mind to. He is a huge part of our family and his older brother adores him and they are the best of friends.  As I watch the boys play together it makes my heart fill with joy. Everywhere we go people are drawn to Theo as he beams at them and flashes his big blue eyes. We have good weeks and bad weeks still with Theo’s health but we will support Theo every step of the way because we are his family and we love him to bits and we wouldn’t be without him.

At our 20 week ultrasound in September 2019, we found out we were having a girl, and we couldn’t have been more excited. So as we’re texting our families and friends we didn’t notice the looks on the ultrasound tech’s face, and we didn’t listen to anything past “it’s a girl” and “all her major organs look great.” We figured that’s everything we needed to know.
     My OB was in surgery, so we were sent home so excited to share the news with her big brother. Then the OB’s office calls me, and asks me to come back in.  I’ll never forget the nurses faces as we were walked back into his office…everybody looked so sorry and sad. He just kept saying her arms were short, and her chin was small, but he didn’t know what that meant and couldn’t give us any real answered because he just didn’t have them. I couldn’t even really process anything that happened for days. The fear was so great all I could do was cry and pray.  Every time I allowed myself to think about it I cried and begged God to let everything be okay. I wanted my little girl.
     We were transferred to Texas Children’s Hospital shortly after for a high risk OB, my husband and I walked in so scared, looking around to see lots of pregnant women with worried glances too. It was terrifying. We met with genetic counseling and decided to do an amnio. This wasn’t an easy decision, but it would either tell me nothing was happening, or pinpoint the exact diagnosis we needed, giving us months to plan for her arrival.
     After the amnio we waited and waited, and I googled. In my google searches I actually came across TAR syndrome, and added it to my list of suspects. About 5 days later (maybe 22/23 weeks pregnant my genetics team called and said “so we didn’t think this was even a possibility because it is SO rare, but your daughter has TAR syndrome.” And  I had a breath of relief…followed by more fear. On one hand we had a diagnosis, and on the other we had a platelet issue. I got in touch with the Lucky Finn page and they sent me to a few profiles that had children with TAR syndrome, and I got to ask families a million questions, which helped me because I got answers from people who had actually lived through it.
     Over the next months we met with hematology, orthopedics, cardio, neuro, and neonatology, and I slowly felt more and more prepared. I also felt sad that this poor little girl had to have so many doctors. Her due date came closer and closer and we finally had a plan of action for her arrival.
     Teryn Labay was born on January 31, 2020, and she was the most beautiful baby I’ve ever seen. She was in the NICU for 6 days with a few transfusions and we finally got to go home.  Some days we have challenges, and she’s been through quite a lot, but we are far more blessed than broken.