“Seasons” – Nathan

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

07Sep 2016

Family Picture

“Seasons” – Nathan

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. 

This return to school is an exciting time for us, as we welcome new experiences and try to begin the process of planning for the fall and winter to come.  Aside from school starting, we have had a few other things going on since I last posted.  The hub and mainstay of our family, I call her my wife, had to undergo a medical procedure that has pretty much removed her ability to lift or bend for the last four weeks and a few more to come.  At the same time, I have had the opportunity to participate in a full-time education program, which I have been putting off for several years.  Oh, and while all this was going on, we still have had the usual mix of staffing changes, appointments, and everyday fevers and illnesses.Waiting in Stroller

I bring all this up to say that our usually calm late summer and early fall season has turned into something more reflective of chaos than the Pumpkin Spice Latte filled serenity(ish) world we expected, and that is ok.  I think as an individual and as a family we are learning to accept that these seasons will come and go, especially if you read my post from a few months ago. Despite this idea of becoming more comfortable as time goes on, I still notice that I keep getting asked “how we do it” by just about everyone who has heard about our unique blessings. I still have not really responded with the answer that is in my heart as first and foremost I know that this question usually comes out of true compassion. If I were to give some interested new friend my honest response it would be, “how could we not do it?”.  If there was a way to avoid all the craziness I have not found it, nor have I really had the time or felt the desire to look.  

My family, just like yours I am sure, has seasons in it that vary as widely as the weather in (insert your area) does. Although we try to prepare for the seasons that we know are coming, to prevent panicking over the equivalent of a predictable snowfall in January, we realize that CTD has created unique aspects in our lives that require us to be ready to make the best out of an unexpected snowfall on the fourth of July as well! After all, I think that the best way to be prepared for the upcoming changes is to accept that those changes will happen, usually when we least expect them.

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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.