“#MyGivingStory” – Chuck This story was shared with #MyGivingStory in connection with the Giving Tuesday initiative. #MyGivingStory shares the stories of everyday heroes giving their time and talents to the […]
“Patient Champion” – Amy A couple of weeks ago, we participated in something special – our Ben was a Patient Champion at the Nationwide Children’s Hospital Columbus Marathon and Half […]
“The Feeding Tube Post” – Nathan Good day friends! For this blog, I thought I would write about something I have been asked about several times, the feeding tube. It […]
“Let It Be” – Amy As a mom of a child with a rare condition, particularly of my Ben who has Creatine Transporter Deficiency (CTD), it’s so easy to let […]
“Realignment” – Nathan Good day again readers! I hope everyone has been enjoying the warmer days and (hopefully) sunny weather. If you caught my last post, I discussed the expectations […]
“Perseveration of Speech” – Janet Hi everyone out there! I hope everyone is doing great. Just to fill you in on our family, we have 4 kiddos, 1 of them […]
“The Advocate, The Meanie, The Mom…” – Regina My oldest child, Chelsi, my first born, my 18th birthday present, and my graduation gift all bundled into my arms forever changed […]
“Speed Doesn’t Matter, Forward Is Forward” – Shelly If you read my previous post then you know we received our CTD diagnosis at 9 months old. If you didn’t… well, […]
“With a Little Help from My Friends” – Amy Before we found out about Ben’s Creatine Transporter Deficiency (CTD) diagnosis, he was diagnosed with infantile scoliosis due to his hypotonia […]
Our typical day and what our boys experience with CTD.