Ady’s Barracks – Rhys

Meet Rhys CJ Weaver. He is one of the sweetest 4 year old’s that you will ever meet. He loves to laugh and play. Rhys was diagnosed with ASD at the age of two when we realized that he wasn’t meeting his language milestones and we pushed for further testing.

Rhys is our miracle baby. After 13 year of infertility we decided to give IVF one try. If that didn’t work we were going to look at options for adoption. The IVF procedure was a success on the first try and the pregnancy was uneventful until our 20 week scan. We were told by the head of maternal fetal medicine that the ultrasound looked great but that the blood test showed that Rhys had a genetic disorder called Trisomy 18. We were told that Rhys would either pass away before birth or shortly after. We were devastated to say the least. The hospital pushed for further testing but we declined. We resolved to carry our son as far as we could and if he made it to full term we would enjoy whatever time with him that we were given.

Fast forward to 34 weeks gestation and Rhys was born via emergency c-section due to severe preeclampsia that put both of our lives at risk. Our little boy was born at 4 lbs. 4oz and was perfectly healthy. The trisomy 18 diagnosis that we had been given was wrong. Rhys stayed in the NICU for one week to make sure that he was able to eat and regulate his own body temperature.

At age 2, after not meeting his language milestones we requested further testing and he was diagnosed with Autism, and a receptive/expressive language delay. He started Speech therapy and occupational therapy at that time and still receives speech and OT today. Our little boy was born a fighter and continues to show his fighting spirit and perseverance in the face of adversity every day.

Rhys is a very active boy who loves to run. He has eloped from a caregiver before and almost made it to a busy street before he was caught. Thankfully he tripped and fell and the caregiver was able to get to him before he got back up. He has also run away from us but thankfully we were able to catch him quickly. As he gets older (and faster) he is getting harder to catch. Due to his risk of eloping Rhys wears a project lifesaver tracking device and cannot play outside unless we are at a fenced in playground or confined to our front porch.

We are so thankful for the opportunity to participate in Ady’s Barracks so that Rhys can safely play outside at home without the fear of him running off and getting hurt. Due to his language delay he will not respond to his name or answer when called. He loves water and our greatest fear is that he will run away and end up in the pond on our property.

Thank you so much to Ady’s Army for this opportunity and thank you to our great friend Jennifer for nominating Rhys. We are so excited that Rhys was selected for this amazing opportunity.

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