Rhett's Medical Trip to Delaware

Our son, Rhett Lynn, was born on December 2, 2017 with an extremely rare genetic disorder called Rhizomelic Chondrodysplasia Punctata- RCDP for short. This is terminal form of dwarfism that affects less than 100 children in the world. Rhett has extreme bone shortening and malformation along with calcium deposits in his joints, making them very stiff and even small movements painful. Rhett is feeding tube dependent and on oxygen support 24/7. He has had multiple surgeries since birth and also had bilateral cataracts removed at 6 weeks old, so he now requires glasses/contacts to be able to see. Most importantly, Rhett has cervical spine stenosis with spinal cord compression, which left untreated could potentially paralyze him from the neck down. He is unable to get any intervention in Alabama, so we need to travel to Nemours/Alfred I. DuPont Children’s Hospital in Wilmington, Delaware to see specialists in his disorder. There he will be able to get a full spine and brain MRI to see what problems we are facing and what surgical options he has. This trip and subsequent surgery could GREATLY improve Rhett’s quality of life! Unfortunately, I lost my health insurance plan when I left my job to care for Rhett full time, and our new plan has an extremely high deductible. We will have to come out of pocket for all of our travel expenses and a lot of the medical expenses we will incur while in Delaware. Since we are now living on one income, we just do not have the ability to completely fund this trip for our son. Rhett has been through so much in his short life already. He’s had multiple surgeries and hospital stays and experienced more than his fair share of pain. Through all of this, he is still has so much joy! He has already touched the lives of so many people and brought us all closer to the Lord. To know Rhett is to love him, and we are so thankful that God blessed us to be his parents! Our ultimate goal is to give him the best quality of life possible for as long as the Lord allows us. Thank you for your support and for letting us share his journey with you!