My name is Jennie, I’m a Military Spouse with two boys: 5-years-old and 19 months. I started blogging back in June after we received our youngest son’s diagnosis of DYRK1A Syndrome. {Tweet This}
Hello all, my name is Jennifer and I am the author of Failure to Thrive No More. I first began my blog back in June of 2018 because we had recently received our youngest son’s diagnosis of Dyrk1a Syndrome. Other then the support group and some literature there isn’t much to know about Dyrk1a Syndrome. I wanted to share our story, our heartache, our struggles, in hopes to help another family going through the same ordeal.
It has been one of the biggest outlets of my stress. When we received the diagnosis I was thrilled and sad at the same time. You wonder how can you be both? Well, I was happy to finally have answers for Jaxson’s developmental delays and feeding difficulties.. but I was sad for him because this is something that he won’t “outgrow”.
To date there are 220 families affected by Dyrk1a Syndrome. Most of our kiddos have: developmental delays, intellectual disabilities, fine motor skill delays, gross motor delays, feeding difficulties, sensory processing disorder, anxiety disorder, autism, seizures, cerebral palsy, sleep disorders, abnormal gait, skeletal abnormalities, and now I’ve learned that they are susceptible to ear perforation.
To put it bluntly, he will not be able to care for himself without some sort of assistance. That is why I went back to school last summer as well. I wanted to find a job I could work remotely and that’s how I came across Medical Billing and Coding. I already have a Bachelor’s of Science in Health Administration, so I’ve always been intrigued about the billing and coding aspect of health care.
To answer your question, how do we cope? I’ve learned to take it day by day. I use to stress about him developing seizures or some other scary trait of Dyrk1a Syndrome. A recent loss of a Dyrk1a child triggered that fear but I have learned that I can’t control everything. I can live with fear and stress or I can celebrate all of his inch-stones and achievements.. and live day to day!
I wanted to educate and help others while writing about our journey with Jaxson. I also blog about Military Spouse life and Health/Fitness.
Join me Below!💕
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