“The Long and Winding Road” – Amy
“The Long and Winding Road” – Amy Not having a diagnosis for your child when you know something is wrong…
“The More Things Change…” – Nathan
“The More Things Change…” – Nathan Greetings friends! Well, it is that time again as I am once more honored…
“Saying ‘I Love You'” – Beth
“Saying ‘I Love You’” – Beth It wasn’t until this school year, Benny’s 7th grade year, that we realized he…
“Franco’s Journey” – Lisa
“Franco’s Journey” – Lisa This is our story and our journey that led to our son’s diagnosis of CTD. It…
“Why Us?!” – Laura
“Why Us?!” – Laura Sometimes it feels like everything just piles up – from the challenges of being diagnosed, seizures,…
“An update – 4 months on from the GAMT deficiency bombshell” – Kelly
“An update – 4 months on from the GAMT deficiency bombshell” – Kelly If someone told me at the beginning…
“1% Chance” – Laura
“1% Chance” – Laura GAMT is so rare, just getting diagnosed seems to be quite an ordeal. I like hearing…
“Why Getting a Diagnosis Is So Much More Than a Label” – Kelly
“Why Getting a Diagnosis Is So Much More Than a Label” – Kelly My daughter Holly (9) & son Isaac…
“On Valentine’s Day” – Nathan
“On Valentine’s Day” – Nathan Well, it’s here friends, February 14th , and according to the automatic reminder on my…
“My little guy” – Jane
“My little guy” – Jane My little guy is now 8 years old and was diagnosed with Creatine Transporter Deficiency…