“A Boy and His Dog” -Laura

09May 2019

When your child is different, there are a lot of worries. We worry about their health; their education; and their safety. But we also worry whether they’ll have something that most of us take for granted. A friend. A real, honest-to-goodness friend. Someone they can relate to, who likes to be in their company, and who will be there for them in good times and bad. Continue reading

26Mar 2019

Standing in front of my kitchen sink in the cold, blue, January dawn, I run the warm water to wipe off my son’s face before he heads off to high school. The washcloth steams visibly in the frigid morning air as I carefully wipe off Benny’s face, getting off any traces of breakfast or sleepy eyes. He turns 15 in a week. I realize that I have to reach up to wipe off his face. He’s now taller than I am. I’m struck by the poignancy of this moment. Continue reading

23Mar 2019

The Association for Creatine Deficiencies (ACD) welcomes Dr. Ton DeGrauw as part of the Scientific Medical Advisory Board (SMAB)! Dr. DeGrauw joins Dr. Longo, Dr. Andrews, Dr, Barshop, Dr. Chan, Dr. Morita, Dr. Salomons, Dr. Schulze, Dr. Skelton, Dr. Stockler, and Dr. Young as advocates for Cerebral Creatine Deficiency Syndromes (CCDS). Continue reading

05Mar 2019

Over-protective. Controlling. Helicopter Mom. Whatever you call it, that’s who I am. I’ve been this way since my first child was born in 1991. If I could have wrapped all three of my children in bubble wrap and locked them in the basement until they were 30, I would have. And yet, I haven’t been able to protect my most vulnerable child from exploitation and abuse. Continue reading

24Feb 2019

Watching the videos that are posted from the conference brings back the excitement and all the feels from being at the Symposium, surrounded by a community of families, kiddos, medical professionals, researchers, and pharma companies with one thing in common: a vested interest in Cerebral Creatine Deficiency Syndromes. Continue reading

14Feb 2019

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! Continue reading

06Feb 2019

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 deficiencies, communicating in the same room, and then to be surrounded by CCDS parents and their children that I feel like I’ve known for years, and yet had never met, was incredibly special. We were all excited. This was going to be an amazing opportunity. What could we do with this meeting to really capture it? After all, we thought that we may not have another opportunity like this for years. The answer was clear: A video! Continue reading

03Feb 2019

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 months old and the most delightful addition to our family. My husband Dan and I had been seeking answers for some unexplained concerning issues going on with Cadman for almost a year, and finally, the answer was found through the Whole Exome genetic test which the neurologist reluctantly ordered. The test results came in that Sunday a few months after Dan, Cadman and I did the blood work at Rady Children’s Hospital in San Diego, and the neurologist wasted no time in reaching out to inform us of the very unexpected results. It was an expensive test and one that apparently doctors don’t usually order until lots and lots of other tests have been completed and provided no answers. Continue reading

24Oct 2017

Trevor and I both grew up with dogs as family pets. We knew we would one day get a family dog, too. We wanted to get one soon after marriage, but with crazy college life and living in a rental that did not allow pets, it was easy to put off. Levi came into our lives while we were looking for a permanent home, and when he was 6 weeks old we purchased our first house and made some much-needed renovations while living in it at the same time. Did I mention we had a 6 week old?! Ugh! What were we thinking with the timing of all of this?! Ha!
We finally decided we would get a dog when Levi and any future kids were old enough to ask for one, really want one, and help take care of it.
Fast forward fifteen months when Levi started having seizures. We were doing EVERYTHING in our power to get them under control, or to stop them altogether, but it just wasn’t happening. One day, my Dad suggested Levi needed a dog. His exact words included “a therapy dog”. That caught my attention! I know dogs can be healing, and comforting. I looked into it and WOAH!! Pricey is an understatement! So, we kept it in mind – Levi needs a dog. We continued the treacherous path until diagnosis, and with that came a breath of air for all of us. We were then researching side effects of going without creatine, and permanent struggles that may come with GAMT. With it being so rare, there weren’t any definite answers as we came to find out each case and child with GAMT is unique with their conditions. So, what was left to do? Get Levi a dog! When he was 18 months old we found some adorable Labradoodles for sale near our home. They weren’t ready to leave their mom yet, so we continually visited and played with the puppies to see which one picked Levi and vice-versa. These dogs obviously weren’t trained therapy dogs, but our hope was that it would be just the right thing for our little guy. The cutest pup would always go to Levi. He would chase him and chew on his pant legs. It was amazing that time and time again this same puppy would go to him and love on him.
Although Levi didn’t verbally ask for a dog, and he definitely couldn’t help care for him, it was the BEST thing we did for him after his strenuous journey to a GAMT diagnosis.
Meet Stanley!
They continue to be the best of pals, Levi and Stanley. It is great they have also allowed little brother Sawyer in on the bond. We will forever be grateful for the gentle nudge from a grandparent who knew what was best, and for the amazing family dog we now have!

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Disclaimer: All thoughts and ideas expressed in the Creatine Community Blog represent the individual blog contributor's opinions and not those of the Association for Creatine Deficiencies. The ideas expressed in the Creatine Community Blog, and any other locations on the creatineinfo.org website, should never be construed as medical advice, even if the information relates to actual health care experiences of the contributor. Individuals should always follow the instructions of their physician and make no changes to their care unless instructed to do so by their physician.