Benjamin turned 10 this year, something that 7 years ago we didn't think we would get to say. Shortly after Ben was born we found out that he has Cutis Laxa a rare connective tissue disorder that would be difficult to manage but he would be able to live a relatively normal life. As he grew older he missed milestones and didn't develop like others who had the disorder and further testing gave us the horrible news that he has Menkes. Another rare disorder that is caused by the bodies inability to collect and keep copper in the bloodstream and the brain. Ben would never develop like a normal child and the prognosis was terminal. More than 85% of children with Menkes don't see age 3. Ben was 2 1/2. We spent the next few years trying not to let fear lead us and navigated surgeries and complications with eating, standing, school and then a pandemic. But he has proven himself to be amazingly resilient and we saw ages 7, 8 and then 9. When we reached age 10 this January it seems like a dream. He shows no signs of slowing down and indeed his favorite thing to do is to "Go". He communicates through gestures and a lot of attitude in his eye gaze. We hope to be able to get him out next to his big sister chasing her down on a bike before summer. We don't know where the next few years are going to take us, and it may all come to a halt very quickly. But we are going to do everything in our power to get him where ever he wants to go.

This is 10!