Immediately following Caiden’s birth, we knew he was facing many struggles. We had a lot to learn. We had a lot to help him overcome. We had a lot of work. Did I spell that loudly enough? WE HAD A LOT TO LEARN. A LOT OF WORK!
When it was decided to do the first ACD Scientific Symposium and Family Conference in Austin, TX 2018, the idea that so many of us would be all together for the first time, brought on a lot of hopes for a successful conference. The idea that we would have the world’s leading experts in creatine […]
Super Bowl Sunday marks two years since we officially received Cadman’s diagnosis. It was so strange answering an unexpected phone call from the neurologist while watching the Super Bowl, and immediately concerning. Just a couple of weeks prior, we also found out that I was pregnant with our second child, Emma, who is now 16 […]
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 […]
Our son Dylan, who is 5 and was diagnosed with CTD earlier this year, was originally diagnosed with epilepsy at the age of 2. At that time Dylan had a series of seizures including multiple tonic-clonic seizures and 1 absence (that we are aware of). Dylan had 2 sleep EEG’s, the second EEG showed an […]
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 […]
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.
Did you know the Association for Creatine Deficiencies has an amazing patient registry? For rare diseases, patient registries are critical to understanding the progression of the disease and the outcomes families can expect. Our patient registry is strong but we need your help to take it to the next level and include genetic data.
I know those who attended the conference in Texas this summer will all agree that is was fabulous. It was so great getting to meet each other in person. We have all connected through our blog stories and Facebook group, but to actually get to meet and let our kids meet and become friends was […]
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. […]
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