“Grieving the Missed Milestones” – Regina We’ve all been there. Those moments when we witness our kids- or grandkids- struggling to accomplish a simple task which others seem to be […]
“A Day in the Life” – Amy I thought it would be beneficial to share a profile of our four, almost five, year old boy with Creatine Transporter Deficiency (CTD) […]
“Getting Better” – Amy 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 […]
“The Long and Winding Road” – Amy Not having a diagnosis for your child when you know something is wrong is like driving your car somewhere you’ve never been before […]
“The More Things Change…” – Nathan Greetings friends! Well, it is that time again as I am once more honored to be a part of your daily intake of reading. […]
“1% Chance” – Laura GAMT is so rare, just getting diagnosed seems to be quite an ordeal. I like hearing everyone else’s journey, and having this connection. Here is our […]
“Why Getting a Diagnosis Is So Much More Than a Label” – Kelly My daughter Holly (9) & son Isaac (4) have recently been diagnosed with Guanidinoacetate Methyltransferase Deficiency (GAMT). […]
“On Valentine’s Day” – Nathan Well, it’s here friends, February 14th , and according to the automatic reminder on my phone, that means it is time to stop at the […]
“My little guy” – Jane My little guy is now 8 years old and was diagnosed with Creatine Transporter Deficiency (CTD) at 19 months of age – well before we […]
“The Three P’s” – Beth My husband likes tattoos. Really likes them. I do not have one spot of ink on my body. An indecisive person like myself is not […]