How do you sum up 2 years of medical appointments, learning how to be parents, and discovering your child has a life limiting ultra-rare diagnosis? Every time I sit down to tell our story, I struggle with the amount of life we’ve lived in 2 years time. 2 years has gone by in the blink […]
The story of Elijah’s journey is an incredible one. It all started with a phone call from a friend in the fall of 2022. She was searching for nursing services for a child that needed to be placed in foster care. Since Michael and I had closed our fostering license, I wasn’t able to immediately […]
Lennon was born in 2014. He was a healthy baby, weighing 9lbs and 22”long. There were no complications to his natural, unmedicated delivery. He was a perfect infant that didn’t even cry a lot. He was developing normally up to 3-4 months and mastered rolling over well. But, while most babies at 6 months are […]
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… But let’s start at the beginning. I was born on a cold winter morning in a strange place called hospital where people wear white robes. I was confused […]
8 Rare Parenting Lessons I’ve Learned the Hard Way Learning is a difficult process, but I’m a good student. I need to be. I have a child with Allan-Herndon-Dudley syndrome. What? You’ve never heard of this syndrome before? Don’t worry — neither had we until our son was diagnosed. At that moment, learning became a […]
When Kids Ask What’s ‘Wrong’ With My Son Who Has Allan-Herndon-Dudley Syndrome Andreas-Rares Sometimes children come and ask me what is “wrong” with my son. How come he is not running and playing with the other kids? I thought long and hard of what the answer to that question should be. Children understand things that […]
When our baby boy Dillon was born, both me and my husband were super excited. We were nervous but happy. Dillon When our baby boy Dillon was born, both me and my husband were super excited. We were nervous but happy. Everything may be a challenge but we took some major role changes with such […]
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. I’m a special needs Mom with 32 years of experience I have seen a lot of new parents ask why is my kid crying, […]
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 […]
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 […]