“My Worst Fears” – Chelsi Do you ever feel like all the work we do for our kiddos is not enough? How about feeling lost and deep deep pain when […]
“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 […]
“Saying ‘I Love You’” – Beth It wasn’t until this school year, Benny’s 7th grade year, that we realized he didn’t have the phrase “I love you” on his communication […]
“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 […]
“Five Years… Then and Now” – Janet When my son Spiro was first diagnosed with CTD, I thought it would mean better management, a quick fix, and a real turn […]
“The Day That Changed My Life” – Whitnie There are certain days that have a significance in all of our lives. Something that happened on a day that changed the […]