“Ta-da!” Those are the words our spunky little man, Lucas P wakes us up with every morning. Although he can be a challenge, as many three year old boys are, we are so thankful for our little pistol. Looking at him, you would have no idea that he has CAH. His physical and mental abilities continue to astound us. When we see him with his friends running around, it is evident that there is nothing holding him back from enjoying childhood!
It’s amazing to think that almost four years ago, CAH was not even a term in our vocabulary, and now it is something we are consciously aware of. My husband and I will never forget the day we met Dr. Kaplowitz, the Director of Endocrinology at Children’s Hospital in DC and heard the words “Your son has salt-wasting CAH.” At the time, Lucas was only two weeks old and was not doing well. We barely felt capable of raising a baby, yet one with a condition we had never heard of. To say we were scared would be an understatement. We felt alone and unsure of what CAH meant for Lucas’ future and our own. Would he be able to play sports? Would he look different or develop differently than other kids? Would we want to try to have another baby knowing we were carriers? These were just some of the questions running through our heads, among many others.
Thanks to the CARES Foundation, we found answers to these questions and we found a community we could turn to for support. Through CARES, we got advice from another mother of a son with CAH. We met other couples at the CARES conference who have sons the same age and had very similar experiences. CARES has made us feel not alone, and helped prepare us for some of the challenges that come with living with CAH.
CAH is part of Lucas’ life and part of who he is. But, he is so much more and the potential for his future has no limits. For any new parents who have found out their baby has CAH, we’d encourage them to reach out to CARES. You’ll find the resources to know that your children will be okay and they can lead a very normal life. And thanks to CARES you have an entire community supporting you and advocating for you – you are not alone.