Tag Archives: Newborn Screening

“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 […]

“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.  

“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 […]

“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 […]

“Levi” – Laura My name is Levi. I am 5 years old and ALL boy. I love everything life has to offer me. I am an easy going, BUSY, happy, […]