By Judith Miller, PhD, and Rebecca Thomas, MA – The Children’s Hospital of Philadelphia Creatine Transporter Deficiency (CTD) – work presented at the Society for Developmental and Behavioral Pediatrics conference in Savannah, GA.
Greetings again friends! I hope this post finds everyone well as we move headlong into the fall season. Last month I had the opportunity to celebrate Elijah’s ninth birthday. Such an awesome day had me reflecting how much this one little boy had been through in his short nine years on this crazy planet. Upon […]
I recently came across an organization that, when I took a look at their mission and what they based their mission on, really resonated with me. They are called Suffer Better (sufferbetter.org), and their tagline is “give your all, and give back.” It reaches out to endurance athletes who take on grueling training and events, and who […]
My son William (5), has CTD, and started big school for the first time this year. William has always been very passive, largely due to his temperament but also his lack of physical mobility (walking etc.) and significant expressive communication delays. Our main concern was that he would get overwhelmed and lost in a large class at a […]
Meet Max. Six years ago (almost seven), my life changed when he was born. He was my first child and the most amazing gift to me and my husband. When I was pregnant, everything seemed pretty normal. Clinically, the only thing that was wrong with my pregnancy was I had a single umbilical artery. It was […]
My 7 year old son has CTD and Autism. He was diagnosed with CTD January 2012 and then Autism, September that same year. At 1 year of age his symptoms began to be quite evident. By 2 years old, they were in full swing. At 3 years old, when he received the Autism diagnosis, our […]
Well friends, the end of summer is again upon us. Children are heading back to school and hopefully, soon the cool air of fall will again give us respite from the stifling summer heat. In our family, three of our boys are returning to their studies after a few short months of summer vacation.
I went to college with the intention of becoming a scientist. With that in mind, I studied biology and chemistry. While I never ended up becoming the scientist I planned, the knowledge has always proven useful to me. Never more so than when my son Xavier was diagnosed with CTD.
Today I am writing about one of William’s favourite phrases – “Oops, sorry!”. He is 5 and has Creatine Transporter Deficiency (CTD).
A couple of months ago, I was asked to write a blog about having a brother with CTD. I promptly dragged my feet in doing it. What was I supposed to write about? That it sucks? That’s not true. That it’s great? That’s not true either. With my first draft, I aimed to get to […]
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