Our Child Xavier was born premature around a year and a half ago. From the first couple days in the NICU we suspected something was going on from the birthmarks he had. The cafe au lait spots as they are called was a pretty clear indication and we had the genetic testing done that has confirmed that. So far we’ve been going to the doctors at CHOP and seeing specialists for him. My wife and I work opposite shifts to care for him and I closed my small business to focus on my family. He truly is the light of our lives. My wife and I are not tall people so the short stature is not that surprising but we’ve recently been dealing with his non verbal skills and are currently trying to teach him sign language to help. He’s learning his signs quite well and has helped tremendously ! At some point in his life I hope we can find a better treatment plan for NF1 at the very least . (right now it’s just monitoring and reactive treatment) ,Of course I hope they find a cure one day.
Xavier Thomas Saxenmeyer
Our Child Xavier was born premature around a year and a half ago. From the first couple days in the NICU we suspected something was going on from the birthmarks [...]