Creatine Community Blog

19Aug 2017

Sawyer in hospital bed

GAMT is really, really, rare. We all know that! I am sure quite a few of us have been told to buy a lottery ticket a time or two. We have! With the chances and diagnosed cases and all, but can lightning strike twice? We may be going for the lotto next! Continue reading

13Jul 2017

Today watching Levi peddle his bike as fast as his little legs would take him off the curb, as he demonstrated and showboated his new tricks on his bike, I couldn’t help but smile and celebrate with and for him. Prior to his diagnosis, there were so many “missed/delayed” milestones that it became frustrating at points for us as parents to wonder… sure every kid walks at different times, but our kid
doesn’t/hasn’t done (fill in many blanks here) yet. Continue reading

06Jul 2017

Family Photo

Ben’s recent Creatine Transporter Deficiency (CTD) diagnosis has hit me hard emotionally, so I thought that an honest account of these emotions could be cathartic. I have gone from feeling sorry for myself, to feeling numb, to feeling a bunch of different emotions – some rational and others not so much. Ben was just diagnosed in January, so many of these emotions are quite raw. I thought perhaps others could relate to this daily struggle that I’m still trying to master – keeping the darkness at bay and clinging to the light. The following are some regular visitors in my daily assortment of emotional lows and highs. Continue reading

29May 2017

Kelly and Toby sticking out his tongue with a lollipop

I’ve made no secret that our family life is somewhat different from the norm. Our home life is different as we live with 2 of our 3 children’s GAMT deficiency and all the disability that comes with it. Everyone knows it has consumed, shaped, and defined Holly & Isaac’s lives and our lives as parents. Continue reading

27May 2017

Sealed pouches and laminating machine

We recently returned from a very fun and needed vacation to Disneyland! It was magical with a 5 and 1 year old. We packed in all that we could and enjoyed every moment of it, but the day after we got home, I still managed hearing the question from Levi asking if we could make a new countdown chain and go back again soon. I will consider that a successful trip! Continue reading