We were initially told at our 20-week scan that James had caudal regression syndrome, but they literally had no idea of the outcome because they had never seen the condition before. I was so devastated because all I needed to know was whether he would survive the pregnancy or not, and they didn’t know. I did some research online myself until we got to see consultant at a bigger hospital. They confirmed the diagnosis and explained the issues he would likely have, but they had never seen the condition either, so basically, we were given very little hope for a good outcome.

He was born by C-section on a Thursday night and transferred to another hospital 4 hours away the next day. He was needing a bit of oxygen but was otherwise okay. I remember seeing him and just thinking how perfect he was. His legs were in Buddha position, but it barely registered for me at the time. It was 5 days later before I got to see him or hold him, and he wasn’t home for 5 days after that. Being separated all that time was horrendous.

Doctors told us after he was born that he would most likely never sit up or have any quality of life. That was the first time I cried, hearing those words! Thankfully, James has proven them wrong. He started school this year and has everyone wrapped around his little finger. He has hit every milestone and more. He is happy and content and lives life to the fullest. He has a wonderful quality of life. He doesn’t care if he can’t walk like others, and if anyone says to him that he can’t walk, he promptly replies, “Yes I can! I use my hands. I bet you can’t do that!” He’s the biggest blessing I’ve ever had, and I wouldn’t change a single thing. He has taught his extended family and us so much, including what true love really means.