Author: Margaux JosephPatient or Advocate: Jordan JosephDisease Affiliation: X-linked Creatine Transport Deficiency
Jordan is a happy, almost 13 year old, boy that lives in New Orleans. We started on our journey to answers in February 2007 when Jordan was a year old. At the age of 7 months I knew something was “different” with my kid. I often brought it up to his doctors and I was constantly reassured that he would “catch up” there was nothing to worry about. I knew otherwise, I guess it was just a mother’s intuition, I had this feeling that I should just strap on in because this was about to be a serious ride. May 2015, we finally got a call to come back in for the results and Jordan was diagnosed with CTD which is an X-Linked Creatine Transport Deficiency that effects pretty much every function of the body. All I could do was cry, not tears of sadness but tears of joy, relief, and happiness because we finally had a reason for Jordan’s condition. Jordan is the reason that we wear our denim and so are all the other kids with a rare disease. Parents don’t just settle, keep pushing!