Waylon’s Journey

Thymus transplant update 

 Waylon is almost 6 months old now and has grown so much during his stay at Children’s Cincinnati Hospital. He has overcome every medical hurdle that has come his way and continues to prove to his doctors how strong he is. He is the strongest little boy we know and is such a fighter, with a smile that lights up the room and melts our hearts ♥️ 

 We have been waiting to make this post in hopes that We would have more answers by now but we won’t have any for several more days. Waylon was denied the thymus transplant through his insurance, he was denied the transplant needed to save his life. The transplant is over 2.7 million dollars and his insurance decided its “not medically necessary”. This is a major set back for us, he’s come so far in life and we will not be giving up. Our next step is to submit an appeal which is likely that it will be denied as well. If the appeals are denied we will work with Cincinnati children’s on the next steps to fight this. We will not be giving up.

Waylon Strong 

Waylon Grey was born on April 22, 2022, In WV, with one kidney and a rare medical condition called CHARGE syndrome and Severe Combined Immunodeficiency {SCID}. When he was born, there were complications, and he was unable to breathe on his own and had to be placed on a ventilator. Waylon continued to have difficulties and was life-flighted to Cincinnati Children’s hospital on 5/5/2022 to the NICU unit. Waylon's team of Specialists has explained to the family that he is what they call textbook baby with Charge Syndrome. Waylon has all the characteristics and severe symptoms of Charge.

Waylon has Bilateral Choanal Atresis, when both nasal passages are blocked, which causes difficulty breathing. Waylon has undergone several surgeries to open up his nasal passages, but he is still unable to come off the vent due to other complications. Waylon is also at severe risk of infections due to SCIDs and has no immune system; any infection is life-threatening to him due to having no T Cells and very few B cells due to an absent thymus. At this time, Waylon's medical team has explained that he will need a thymus transplant and will likely be hospitalized for six months or longer. Only two hospitals in the country do this transplant, Duke University and GOSH in London. Waylon also has several cardiac anomalies that will need to be addressed and is scheduled in the upcoming weeks.

Waylon had already undergone three surgeries to repair his Choanal Atresia before he was a month old and had his first major surgery last week to repair his TEF( Trachea Esophageal Fistula). As time moves on, Waylon has shown us he is a fighter and is holding his own, but he has a long road ahead of him and will need to be hospitalized for several months and more additional surgeries in the future.

Waylon's mother, Katie, has not left his side, and the family could use some extra help. The reality of receiving medical treatment in a city, hours from home, means mounting medical and day-to-day expenses. Please consider donating and sharing with others. Any support helps alleviate the stress of the financial burden on this family as they work to bring Waylon home.