Gannon the Great!

For today’s Throwback Thursday post, we’ll revisit a story about “Gannon the Great” who was born on Thanksgiving day! Since Thanksgiving is next week, we are sending him a very special HAPPY 7th BIRTHDAY from the Icing Smiles family!

Precious Gannon was born 6 years ago on Thanksgiving day. He came into the world with long, dark hair, just like his two older brothers. Unbeknownst to his family, he had something his brothers did not – a genetic disorder called CHARGE Syndrome.

Immediately after birth Gannon was taken to the NICU for evaluation due to his breathing problems. His parents expected to have him back in the room within an hour. This turned out not to be the case, as he required a CPAP to regulate his breathing. A few days later, with Gannon’s parents following closely behind a transport vehicle, he was whisked away to a larger hospital so specialists could evaluate him further and work together on a treatment plan. He underwent several tests, including genetic testing.

Genetic testing revealed that Gannon had CHARGE Syndrome. It is a recognizable pattern of birth defects which occurs in about 1 in every 9-10,000 births worldwide. CHARGE Syndrome is extremely complex, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend several months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

One of the hidden features of CHARGE syndrome is the determination and strong character these children display. This certainly describes Gannon! He has been hospitalized over 40 times in his short life, requires oxygen, hearing aids, and a suction machine to clear his airway. He also uses sign language to communicate.

Yet, despite all this, Gannon thrives and finds joy in everything. For his 5th birthday, he requested a Henry Hugglemonster themed cake. Marsha Quarles of Marsha’s Specialty Desserts did not disappoint. Gannon’s face lit up when he saw the cake! He made sure to look over every detail with great pride!