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 story 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 Story!
When we first learned that Drew had TAR Syndrome, the news hit us like a crumbling mountain.
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?!?
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!
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…)
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!