#SeasonofSmiles -Whitnie

21Aug 2019

A phrase I hear quite often is, “I don’t know how you do it.” I don’t always know the correct response, so I usually just smile and take it as the compliment I think they intend it to be. I am not sure what they are seeing from their perspective. Are they seeing Jacob throwing himself to the ground in a temper tantrum? Are they seeing him frustrated when he can’t communicate his needs? Are they seeing me as a frustrated mom trying to do my best with the situation? Are they seeing him as a happy child? I see all of these things.  Continue reading

07Aug 2019

My fourth Ironman is in the books. Lake Placid, New York is a beautiful place and the trip was amazing. Beth and I chose this location because not only could I participate in the Ironman event, but we were celebrating our 20th wedding anniversary and the venue did not disappoint! We won’t soon forget our time there. Continue reading

15Jul 2019

Hello again, friends! I know it has been a while since I have updated everyone on what’s going on in our daily lives. Well, I will be the first to say, things have been a bit hectic this summer, but the craziness is welcome and we love the way that our lives are evolving! Continue reading

10Jul 2019

The Association for Creatine Deficiencies is excited to partner with Coriell, a world leader in biobanking (the collection of biosamples for research purposes) to collect and store cells from patients with Cerebral Creatine Deficiency Syndromes. We need your help as a community to donate cell samples to enable research! Continue reading

07Jul 2019

I know I’m one of the lucky ones. We still have our son. There was a moment in time where I seriously considered giving up custody of my precious baby boy, my third child. Sam is 21. He has CTD and therefore, Autism, Epilepsy, Sensory Processing Disorder, food sensitivities, ah… you know the list. Continue reading

30Jun 2019

The Society for Inherited Metabolic Disorders (SIMD) holds a 3-day meeting every year to discuss and share ideas about metabolic disorders. This year, the meeting included a satellite session on Cerebral Creatine Deficiency Syndromes, hosted by the Association for Creatine Deficiencies. Our ACD team was represented by the irrepressible dynamic duo Heidi Wallis and Laura Trutoiu. Continue reading

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

20Nov 2017

As we approach the holiday season, it is customary to reflect and give thanks for the blessings we have. It’s also the season of giving and a time of year when many open their hearts and wallets to share in their blessings and give back to many meaningful charities.

For me, I enjoy the opportunity to live on both sides of this giving equation. I am blessed. I have a loving husband and three beautiful children. Our life is wonderful. We play sports, go to school and work, and enjoy everything that we can as a family of five. We raise our children to be kind and to give.

Our middle child suffers from an incurable rare, genetic disorder called X-linked Creatine Transporter Deficiency (CTD). His is one of three cerebral creatine deficiency syndromes and the reason I also find myself devoted to a nonprofit that is on the receiving end of this season of giving- receiving donations from AmazonSmile.

I joined The Association for Creatine Deficiencies a few years back in an attempt to help my son by helping others. My son’s disorder doesn’t have a treatment, but I rationalize my dedication to the cause in hopes that, in some way, I might make a difference, if not for him directly, for the others who will inevitably follow.

This journey that started out as self-preservation has evolved into a passion and a purpose. Today, the ACD is a thriving organization driven by mothers, just like me, who can’t give up hope that one day they will make a difference for their children and so many more.

AmazonSmile has touched our organization, not only financially, but spiritually. AmazonSmile is a way for our community, family, and friends to share in our purpose and to contribute to our cause in an effortless, yet significant, way.

A simple purchase that equates to a larger financial impact goes a long way toward helping the ACD sustain our mission to providing education, research opportunities, and support for patients diagnosed with GAMT, AGAT, and CTD. Participants in the

AmazonSmile program can share in our pride and accomplishments knowing that they too, can make a difference with a simple click on smile.amazon.com/ch/46-2133007….and, knowing you are making a difference makes everyone smile. Thank you Amazon! #seasonofsmiles #acd #ctd

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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.