Celebrating our Limb Difference and Rare Disorder community.
Sharing amazing, unique friends stories is just one way to build community and raise awareness. All of our stories are different and unique, none of them are the same. There is strength in sharing our journeys. If you have a warrior you’d like featured, be sure to contact us. We would love to share their story.
Present without a trace…
Grief is love unfinished
Love is the only miracle I know!
Only Love can go where senses can’t, where body, words or imagination cannot. Love knows no boundaries between this world here or that world over there, between us here and you there…
A light like yours can’t go out. And even though I can’t see you, when I look up at the twinkling stars, I know you are still shining somewhere too. We will see you on the other side of the stars…
Leon came into this world a fighter in October of 2017, he left us as a fighter in August of 2018. This page is dedicated to his to his memory and the fighter in all of us.
Our Featured Warrior!
When we first learned that Drew had TAR Syndrome, the news hit us like a crumbling mountain.
The technicians spent an uncomfortably long time jabbing the wand into my belly to try to get a clear picture as I just waited for them finally reveal what they were thinking. The doctor finally said that his arms were short, so short it didn’t appear that they could touch midline. I just continued to cooperate waiting for them to get a better picture so they could see his full arms since he was hiding them fooling us into thinking they weren’t there. Then, together with some results of an earlier test whose results were unclear at the time, but suddenly made sense with this new information we’d just seen, he received the official diagnosis: TAR Syndrome. They didn’t have much information on TAR at all because it’s so rare. They read information to me from old files. My mind buzzed with shock. “40% mortality rate.” “He’ll need blood transfusions once a week for his entire life.”
The next few weeks were difficult as we came to terms with the news. Were we equipped to handle something like this?!? Will baby be happy and thrive throughout life? Are we signing him up for a lifetime of pain and suffering? If I didn’t have arms and needed weekly blood transfusions every week for 70 years, would I even want to live?!? Will he have friends or will he be perpetually emotionally tormented for his disability?!?
But, then I found other parents online (pre-Facebook) whose children have TAR. And, TAR babies thrive and with early interventions, births aren’t as risky as I had been led to believe. And, they don’t need transfusions for their entire lives. I learned about kids who lived almost normal lives. They were happy. They played in sports. They were popular in school. Sure, they had challenges but their lives weren’t as bleak as I had imagined.
So, after our period of grieving, we gave our boy a name, Drew, and decided we would figure this out.
Drew was born in a children’s hospital in the next state during a scheduled C-section and much to my delight, Drew let out a cry! He was sent to NICU for an immediate platelet transfusion while I was sewn back together.
It was soon found that he had some moderate heart defects that were stable and not of concern at the moment, but would require to be monitored throughout life. And, we learned that Drew’s legs were also bent, unable to straighten and were rotated, but honestly, between the drugs and onslaught of information, we were just happy to be feeding him and holding him. And, despite early reports that he’d have to remain in the NICU for weeks, Drew was actually stable enough to go home after three days!
We brought Drew home and we just loved him and kept a calendar where we wrote down all of his appointments. We were taking him to a children’s hospital three hours away, 2-3 times a week to check his blood and receive platelet transfusions, 12 in total until he was 2 months old. Then he started producing them fast enough to hover just above the threshold at first and continued to slowly rise so that he only needed checks once a month, and then three months, and then yearly and now, 12 years later, only needing them before major surgeries.
Drew did end up having to have open heart surgery immediately before turning one year old to correct some functions that started to decline and with daily medicine after that, his heart was stable. This allowed for us to pursue answers for his legs.
Our search for orthopedic specialists took us from Nashville, TN to Shriner’s in Lexington, KY and St. Louis, MO and even the #1 Children’s hospital for orthopedics in Boston, MA. We were always met with head scratches and reluctance to surgically correct Drew’s legs because each specialist felt it might serve Drew well later in life to be able to use his feet to compensate for his shortened arms and perhaps straightening them would do him a disservice. As helpful as it was to move a toy from one hand to the other occasionally, Daddy and I felt strongly it wasn’t worth sacrificing the independence of walking. But after three years and four specialists and no answers, it began to feel as if we were chasing a fool’s dream.
Then we learned of a world renowned specialist in Florida. He may have been over 1000 miles away from our home in Kentucky, but we knew this would be our hail mary and we were taken aback by an unheard of “Yes! I can fix Drew’s legs so he can walk!”
Now, I had the ensuing surgeries all detailed here in a feeble attempt to demonstrate to you, the reader, how much of a warrior Drew has been. It doesn’t seem fair to blow over the next five years of major surgeries because it diminishes everything Drew endured and overcame. Please genuinely appreciate each attached picture as they’ll tell a better story than I could. So, you’ll just have to trust me that Drew has survived more than you’d think is possible. He went from not being able to walk to taking his very first steps at 5 years old. It was an excruciating process that took up a full 8.5 x 11 page to describe and later edited to save you some time reading.
28 surgeries: 13 on his legs, 2 open heart surgeries, three on his arms, and a variety of others (ear tubes, tonsils/adenoids, port-a-cath…)
It’s been hard. Expensive for sure. But Drew has really been an amazing warrior through it all. He has endured more pain than you can possibly imagine. He’s required daily doses of Oxy and Vicodin for extended periods of time to get through a day. He’s been hospitalized numerous times. He’s been stuck with a needle more times than I can count. He’s had bones broken. He had his foot turned the wrong way for 3 weeks once when there was a mixup with the schedule. There is no way that I can adequately describe the enormity of what he has faced.
But, he isn’t defeated. He doesn’t dwell. He has a fair fear of needles, but he faces each surgery with bravery. He doesn’t like hospital stays, who does? But, he does it. He faces them head on. He endures.
He was unable to stand or walk for the first 5 years of his life and we went through hell, Drew more so than anybody else. But, still seven years after the completion of Drew’s first correction, I watch Drew walk or run or play a sport, I get emotional sometimes. To be told “no” so many times and think at some point that it’s just not in the cards and then to take a gamble, put him through a process so excruciating and grueling only trusting the word of a specialist and having many, many, many doubts over the months of torturing your son, and then to see him actually play soccer on a field with his peers is indescribable. Every tear was worth it. Every scream was hard, but it was for a good reason. He did it. WE did it. We survived it.
In between surgeries, he has a personality the size of Earth. He loves pranks, plays soccer, dances, and has many friends. He was even on his school’s basketball team as team manager and taught himself how to dribble a ball…with a very short arm. He’s widely accepted by his peers because he’s just a real likeable guy. He’s outgoing and not shy. He’s determined, he’s active and adaptive. He’s confident and when he can’t do something because of his disability, he just finds a different way to do it. You’d never be able to tell he had a disability based on his personality and enthusiasm. Occasionally, in new situations, he gets bothered by stares and nosy questions from new kids, but he doesn’t let it get him down. He’s even responded to nosy questions in the most hilarious ways. Once, he told a kid who asked why his arms were so short that, “I chewed them off when I was a baby.”
So, to answer my earlier questions, turns out we figured things out just fine. Drew is very happy and thriving. Life for Drew certainly has it’s challenges, but otherwise, he’s just as well-adjusted and happy as he can be. Turns out he didn’t need as many transfusions as they thought. And, Drew has plenty of friends and loves life. I’d give TAR 1 star in affordability and 5 stars in adventure!