Grayson

2019 EMBRACING BRAVE North Texas Fall Recipient

Meet Grayson, he is an amazing and fearless four year old! Grayson was born with Aplasia Cutis and a rare genetic mutation called Adam-Oliver Syndrome (we didn’t know it then). 

In 2016 when Grayson was a year and a half old, he was diagnosed with Chiari Malformation and through genetic testing, Adams-Oliver Syndrome. He had his first brain decompression surgery shortly after diagnosis. A few complications led to Grayson getting a VP Shunt. 

Everything held for a bit, but as Grayson grew his Chiari began to grow back. In 2018 it was discovered that not only did his Chiari grow back, but he also had a tethered spinal cord and tethered brain stem. During this time they also suspected that Grayson’s brain did not have enough space, and wanted to make sure. His doctors began correcting these issues starting with the least invasive. After this, they closely followed Grayson with scans and follow up appointments.

In 2019 Grayson’s Chiari grew back AGAIN! It was at this time that with the aid of scans and his previous surgeries that his doctors were confident that his brain needed more space. They diagnosed him with complex Craniosynostosis, which began a series of surgeries to expand Grayson’s skull. We had a few bumps along the way, but now Grayson is rocking is rolling! 

Grayson has a scalp expansion surgery in the future. His team is confident that Grayson can wait a good year and a half for that surgery since he is healing so well! This means Grayson gets an awesome summer next year! 

Now that we covered the nitty gritty let’s talk about Grayson! Grayson is four years old, and he really is fearless! I’ve never met someone with as much strength or resilience as Grayson. It is an honor and blessing to be his parents! Grayson loves all things fishing, building, drawing, and bugs! He loves all animals actually, I think that we would have a zoo if he got to decide! He is convinced that we are getting a Kitty in the next year or so, but who am I kidding- we probably will! Grayson loves spending time with his two dogs, Georgie Pordgie, and Kion My Boy! Grayson’s favorite super hero is the Flash! Grayson is the Flash, he runs so fast that lightning bolts follow him everywhere he goes! Grayson has one brother who is his absolute best friend and two sisters (one big and one little). He’s just a ray of sunshine to everyone who meets him! 

Thank you, Just for J, for this amazing honor! We will use funds that are raised to aid in Grayson’s upcoming operations. Grayson loves the beach so much that we would love to take the family on a beach trip at summers end after Grayson is cleared to get back into the water.  - 2019

You can help support any of our Honorary Families, by donating to Just for J, Inc.