Norien looks like your average two-year-old, he’s always on the move, but it’s the way he moves that’s a little bit different.
Norien was born with Arthrogryposis Mulitplex Congenita (or AMC for short). It is a rare congenital condition that causes contractures and weakness in his limbs and muscles, making it nearly impossible for him to walk and do certain day- to -day tasks.
When we first found out that we were pregnant we already had our daughter Nevaeh (heaven spelled backwards) who is severely autistic. We thought that this baby was going to be our average child.
We were devastated when we were told of the severity of Norien’s condition but we knew from his ultrasound pictures that he would be a fighter. And that is exactly what he is! At age 2 Norien has already had 27 surgical procedures.
Our family lives in Lynchburg, VA. The only doctors who can help are in Philadelphia at Shriners Hospital for Children. They are two of the only doctors who specialize and are widely known for their work with the majority of other “AMCer’s” nationally. We did not know how we would be able to travel for his treatments every other week. It was an expense our family could not afford.
Luckily we found out about Angel Flight East. Our appreciation for AFE, their volunteers and donors far surpass any words we could ever express.
It’s stressful but we keep going because we know we have to be strong for Norien. If he can be strong and go through all of the surgeries and all of the pain and the tears, the least that we can do is be strong for him.
When we’re in the air with all of these AMAZING volunteer pilots there’s a pause in the chaos that lies under the beautiful clouds and we know that we’re making it to the appointments our son desperately needs AND making it back to our little princess who needs all of us.