CTD Specific

Every kid dreams of growing up to be a superhero. I can remember running through the house pretending to be everyone from the Incredible Hulk to Superman, and who didn’t dream of shooting webs like Spiderman? Well, fast-forward a good number of years and unfortunately, I am still not a superhero. I don’t think any child ever has a single moment in which they realize that they probably won’t grow up to be a superhero, rather it is a slow transition from what could be to what really is. Right now, you are probably hoping that I have some kind of point I am trying to make with all of this, and I promise I do, just bear with me. Continue reading

I love this time of year! I love snuggling with my kids beside the soft glow of the Christmas tree and pretty decorations as they fall asleep. This is a magical time of year to see their faces light up as we drive through town or when they see there is a present under the tree with their name on it. The Christmas season is a great time to reflect on everything that has happened throughout the year. We have had some great times as a family. Continue reading

This story was shared with #MyGivingStory in connection with the Giving Tuesday initiative. #MyGivingStory shares the stories of everyday heroes giving their time and talents to the charities they love. Continue reading

A couple of weeks ago, we participated in something special – our Ben was a Patient Champion at the Nationwide Children’s Hospital Columbus Marathon and Half Marathon. It was the most amazing experience for all of us, including Ben, and one we’ll not soon forget. It made us feel seen, heard and celebrated. Again, amazing. Continue reading

We just had our first big family vacation. Overall it really was great, we had good strong family moments, Lilah got to chase seagulls, Tyler got to ride in a helicopter, and I got to swim in a tank with dolphins! We had some magnificent food and a good recharge from work and social life. You know what we didn’t get a break from? Our CTD world.  Continue reading

Hello, my name is Chelsi and I have CTD. 23 years have come and gone before I even knew about this condition. If it wasn’t for my son I would have gone my whole life without any knowledge. When I first got diagnosed I was scared. What does this all mean? How are people going to react? Am I going to be treated differently? Life wasn’t always easy for me growing up. Making friends was a struggle. Communicating appropriately with someone was definitely a no go for me. Continue reading

Good day friends! For this blog, I thought I would write about something I have been asked about several times, the feeding tube. It goes by many names, ranging from G-tube to Peg or Mic-key, but they all do pretty much the same thing, and in my opinion, that thing is to provide an amazing way to deliver nourishment to my boys. Now before I go further, I have to give the request warning that I am in no way, shape, or form a medical professional. I do not intend for this blog to convey medical advice or a course of treatment. Rather, I would like to tell everyone how we wound up being a “tubie” family, what benefits and challenges we have faced, and finally, I will add a little advice that I think would be helpful for everyone to know. Continue reading

As a mom of a child with a rare condition, particularly of my Ben who has Creatine Transporter Deficiency (CTD), it’s so easy to let your mind wander into topics that make you really sad or scared. That’s been happening to me recently. Continue reading

Good day again readers! I hope everyone has been enjoying the warmer days and (hopefully) sunny weather.  If you caught my last post, I discussed the expectations that my wife and I have for our boys with CTD and how those expectations or goals have changed over time.  As I finished writing that post, it kept coming back to me that the boys aren’t the only ones who we had expectations for that required some level of realignment. Continue reading

Hi everyone out there! I hope everyone is doing great. Just to fill you in on our family, we have 4 kiddos, 1 of them has CTD and Autism. We have had a rough go lately it seems with our son and his language. Our son Spiro has a huge vocabulary I would admit for someone presenting with CTD. We can talk to him. He can answer us. He comments on situations around him. It’s not always correct or sounds right but it’s there and we are happy with where he is at as far as speech goes. Continue reading