“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…
“The Three P’s” – Beth
“The Three P’s” – Beth My husband likes tattoos. Really likes them. I do not have one spot of ink…
“Five Years… Then and Now” – Janet
“Five Years… Then and Now” – Janet When my son Spiro was first diagnosed with CTD, I thought it would…