MCT8 - AHDS Foundation

Susan D. Fidek is the mother of Jonathan who has MCT8. Here she shares her many years of experience and wonderful advice on how to care for your child with disabilities.
Jaeden was born in March 2009. He was a healthy baby boy with no initial issues, even scoring an APGAR score of 7 when he was born. At three months of age, Jaeden started to present with irritability, lack of eating and lack of weight gain, inability to hold his head up (his head would always lean to one side-what I thought was torticollis) and poor central tone-hypotonia.
When our baby boy Dillon was born, both me and my husband were super excited. We were nervous but happy.
When Kids Ask What's 'Wrong' With My Son Who Has Allan-Herndon-Dudley Syndrome
8 Rare Parenting Lessons I've Learned the Hard Way
My name is Andreas-Rares and I’m 2 years old. About a year ago I was diagnosed with a syndrome called Allan-Herndon-Dudley and that chanced my world irreversibly…
I was in denial because I was unprepared to have Zyggy, because we did not have health insurance and we were very tight in our economy but God had sent him to us for a reason and we were determined to make the best out of our situation. We love him just as much as we love all our children. We did not expect to have any issues since we already had two other typical children.