Journey to Answers for Jordan

March 1, 2023

by Margaux Joseph
RARE Parent & Caregiver

Jordan is our youngest son and I knew something was different when he was a baby.  We started having Jordan tested at the age of 13 months.  After his MRI of his brain came back we were told that Jordan may never walk, talk or even be potty-trained, but we knew we wanted more for our child. In 2015 , through genetic testing, we final got a diagnosis of X-Linked Creatine Transporter Deficiency.  In 2015 there were in about 150 known cases in the world.  Through the help of all of the therapies available to Jordan  he is a thriving 17 year old who is walking, talking and even potty-trained.  Never settle for less.  Push until you get answers. Doctors wouldn’t stop their journey if it were their kids.

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