Here is a little history about our family and the inspiration for this blog.

My oldest son Nicholas was diagnosed with autism in May 2018. A week later, he was diagnosed with a rare genetic condition called ZNF462. The gene was passed down from me but I just have a different variant. I was born with a heart condition called pulmonary stenosis. I had no idea it was the gene mutation and there was no way for us to know, since I don’t have as many medical complications as Nicholas. This is where his autism comes from. Not everybody with the gene has autism, but in Nicholas’s case, his autism is genetic.

Nicholas has global development delay, sensory processing disorder, silent aspiration that resulted in a feeding tube, is non-verbal, and has vision and hearing impairment. He’s learning how to walk. He has significant facial features and characteristics, which is what the gene mutation is: a droopy eye, bigger forehead, triangular-shaped head.

Our daughter Grace also has silent aspiration and a feeding tube, which is what led us to genetic testing in the first place. She tested positive for the gene mutation as well. She has similar facial features to Nicholas, however she’s not showing signs of autism or sensory processing yet.

Our middle child Daniel doesn’t have the gene, but he was born with VACTERL association, a birth defect that affects multiple parts of the body. VACTERL stands for Vertebral defects, Anal atresia, Cardiac defects, Tracheo-Esophageal fistula, Renal anomalies, and Limb abnormalities. Typically, a person is diagnosed with VACTERL if they have three or more of the anomalies. Daniel was born with tethered cord, imperforate anus, narrow nasal passages, one kidney, and clubbed foot. He had eight surgeries in his first two years of life.

 

All three of our kids were in the Neonatal Intensive Care Unit (NICU) after birth for 7 weeks, 4 weeks, and 3 weeks, respectively.

Despite everything we’ve all been through, our kids are genuinely happy. Really happy. They are growing and thrive every single day. They are loved beyond measures and have an incredible support system. That doesn’t mean we don’t have hard days though. We definitely have horrible days, but the good days outweigh the bad. It’s been an incredible adventure. I hope to share our triumphs, failures, hopes, and fears. I hope to inspire and share the faith I have in the midst of this journey. Thank you for stopping by and please share your stories with me and any questions, comments, or feedback you may have.