“A Boy and His Dog” – Laura

08Nov 2023

“No Limits” — Lacy

One of the hardest things about learning your child has a disability is the limits that are put on their life. The hopes and dreams you have for them change in an instant. However, once you take a moment to understand what it all means, things come into focus. The shattered pieces that you pick up and and put back together make a beautiful picture that you never would have imagined. 

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15Aug 2023

Prolonged QTc, Long QT Syndrome and CCDS: Q&A with Dr. Mark Levin

Dr. Mark Levin is a board certified pediatric cardiologist at the National Institutes of Health (NIH) and the National Heart, Lung & Blood Institute (NHLBI), and has gained experience working with Creatine Transporter Deficiency (CTD) patients through his work on the Vigilan Observational Study. Dr. Levin presented at the 2021 CCDS Virtual Conference on “Cardiac Abnormalities in Patients and Animal Models of Creatine Transporter Deficiency” and a video of his presentation is available on the ACD YouTube channel.

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27May 2023

“Giant Boxes for Giant Walks” – Faith, ACD Programs Coordinator

I wish I had taken a photo of the boxes that took over my home back in the summer of 2021. At the time I was living in a tiny apartment in downtown Salt Lake City. It was my first Walk for Strength with ACD. How many boxes does it take to transport 700 shirts? I remember asking myself. Surely, it won’t be that big of a deal. Sweet, innocent Faith. Continue reading

24Mar 2023

Reflections on the CCDS EL-PFDD

By Celeste Graham, ACD Director of Education

I had always thought of the Food and Drug Administration (FDA) as a very high-level governmental agency that oversees all things safety and effectiveness, related to food, beverages, supplements, and medications… so high-level and inaccessible that they really didn’t have any interactions with the general public. Continue reading

24Oct 2017

“A Boy and His Dog” – Laura

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.