Tag Archives: Creatine Transport Deficiency

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.

Do you ever have those days or seasons where things are just ‘alot’? I know my family goes through those days. They are hard moments… they seem consecutively laid and they are heavy. Alot of people I know have kids. I don’t walk a day in their shoes, nor do they in mine. But over […]

I thought it would be beneficial to share a profile of our four, almost five, year old boy with Creatine Transporter Deficiency (CTD) named Ben, who presents without seizures. All our CTD kids are different, so this is by no means a profile of CTD, but rather, a profile of our kid with CTD. I […]

Not having a diagnosis for your child when you know something is wrong is like driving your car somewhere you’ve never been before with no directions. All you know is the general direction, and you keep moving that way, but you’re really not sure you’ll make your destination because you don’t know how to get […]

This is our story and our journey that led to our son’s diagnosis of CTD. It has been a long journey to say the least and now this new diagnosis takes us on a new path.

When Trenton was born in New York, he weighed 7 lbs 2 ounces. Before we left the hospital, he dropped to 6lbs 12 ounces, by our first appointment 6lbs 9 ounces and stayed there. He was bottle fed and projectile vomited often. I took him to the pediatrician and they just kept informing me that […]