“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.
“Grieving the Missed Milestones” – Regina We’ve all been there. Those moments when we witness our kids- or grandkids- struggling to accomplish a simple task which others seem to be […]
“Expectations” – Nathan Good day friends! As I am traveling a bit with work right now, I have begun to think a few deep thoughts on what it is that […]
“Back to Blogging” – Janet I love reading special needs blogs. They have lifted me up and carried me through some really tough years with my son. Ironically, it’s been […]
“Because” – Amy At the end of the year, I like to reflect back so I can look forward and plan for the new year. 2017 has been a challenging, […]
“Getting Better” – Amy Ben’s recent Creatine Transporter Deficiency (CTD) diagnosis has hit me hard emotionally, so I thought that an honest account of these emotions could be cathartic. I […]
“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 […]