Nicholas: TAR Syndrome and Limb Difference Awareness
Nicholas is a sweet little boy who was born with TAR Syndrome. It affects his limbs but not his sweet and fun personality. As a passionate advocate for Limb Difference Awareness, this blog piece was written by Nicholas's mother, Christina. Follow along with his journey through life on Instagram by following @uniquelyusbrothers
Strong, determined, adventurous, curious, a fighter, unstoppable, and unique. Those are all words I would use to describe Nicholas. He was born with TAR (thrombocytopenia absent radius) syndrome, weighing 4 lbs. 10 oz. and covered with bruises. TAR causes life-threatening low blood platelet levels and limb differences. Everyone with TAR is missing their radial bones, but each person is unique and everyone has a different collection of symptoms. In Nicholas’s case he was born without arms or knee joints. Does it slow him down? No, not in the least.
Nicholas is lightening fast scooting or rolling across the floor. We had so many fears when he was born. He has broken through all those worries and is figuring out his world. He eats on his own and has even learned how to pick things up with his feet. He loves to eat cookies, read books and play with his older brother Nathan.
Nicholas has had over 50 transfusions through his central line, and 18 hospital stays in the last two years. Because of the blood disorder, having a great hematologist is a lifeline. We saw them easily weekly for the first year. I can now flush a Broviac line and pack a hospital bag like a pro, ha ha. You learn a few tricks after a while; I keep snacks and charging cables along with clothes with me just in case of a surprise hospital stay. Like most special-needs parents, we were scared and overwhelmed when we first found out that Nicholas had TAR. It was isolating, we felt alone and lost. We had never heard of TAR and didn’t know anyone else with similar medical needs. There were IVs, tests and medications, we were in a sort of daze. To be honest, we are still sometimes scared because so much can happen so quickly. Falling down could send us to the hospital for head CT and watch daily for petechiae (small red dots that appear when your platelets are low). He is perfect.
Differences are awesome, people aren’t all the same and they don’t have the same experiences. How incredibly boring it would be if we were all the same? Our differences are our strengths, because we each have something special to share. We love to share our family story, and everything we have learned so far in our journey with Nicholas. Hopefully our sharing will help someone else along their journey. Nicholas and all our kids are beautifully unique.