Super Cooper’s Duke Trip!

My nephew, Cooper, was born in February 2018 with CHARGE syndrome and pediatric congenital athymia. He and his parents have endured so much in his first 3 years of life. He got a virus that almost took his life and has had 11 surgeries. His mommy and daddy fight every day for adequate care and the services Cooper needs to thrive.

Cooper’s mommy and daddy’s biggest obstacle so far has been his athymia. This mean he was born without any thymus tissue. The thymus is important because it teaches the body’s T-cells how to fight viruses. Without a thymus, a common cold could be fatal for him. In order to keep Cooper safe they have lived in isolation his entire life.

The only treatment available currently for athymia is a thymus transplant. Since athymia is so rare, Duke University is the only place in the United States that is offering this life saving treatment. Duke and their partners have been seeking FDA approval for the last few years. This has caused many delays for Cooper and his family. Finally, after waiting for so long, they got the call they’d been waiting for. It was time to go to Duke!!!!

Cooper’s mom and dad expected a 4-6 week stay. Originally Cooper’s daddy was going to stay home and work. Cooper’s nurse, Nana, and I were going to accompany his mom to Duke. However, due to COVID-19 restrictions, only Cooper’s mom and dad could go with him.

They’ve been at Duke for 4 weeks and there is still no donor thymus available for Cooper. The expenses have began to add up and the medical bills are beginning to arrive. My goal is to try and lighten Cooper’s mom and dad’s load during this journey. If you can’t donate then please pray for Cooper!