“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. […]
“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 […]
“Franco’s Journey” – Lisa This is our story and our journey that led to our son’s diagnosis of CTD. It has been a long journey to say the least and […]
“Why Us?!” – Laura Sometimes it feels like everything just piles up – from the challenges of being diagnosed, seizures, hospital stays, to the complications we encounter every day.
“An update – 4 months on from the GAMT deficiency bombshell” – Kelly If someone told me at the beginning of last November, just how much our lives were going […]
“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 […]