Dream Bedroom, Accessible Bathroom

Chromosome Disorder, Seizures, Apraxia

This adventurous young man got a dream bedroom and bathroom makeover. Caleb, the tall and handsome guy pictured here, is in the 11th grade. He exudes bravery and strength and enjoys being active. He loves to snorkel, kayak and hike. He is also a devout sports fan. He loves to watch all sports and imitates the players’ actions. His favorite part of football is kicking. He loves to help and automatically becomes a friend to anyone who meets him. He thinks his smile will get him through life and he might be right; he has an amazing smile. Before Caleb was born it was discovered that he had bilateral clubbed feet. After birth, doctors also discovered that he had a chromosome disorder. At three days old, Caleb had his first of many sets of casts put on to help straighten the feet. After a few castings, Caleb had his first foot surgery at three months old. Soon after that he started experiencing infantile spasms, a form of epilepsy. Over the next seven years Caleb endured four more foot surgeries and countless EEGs. He tried several different seizure medications in attempts to manage his seizures. He experiences a variety of types of seizures and the patterns change frequently. After a video EEG it was determined that he had Lennox-Gastaut Syndrome (LGS). LGS is a rare syndrome in which patients have multiple seizure types along with developmental delays. LGS is treatment-resistant. At eight years of age, Caleb was given a vagal nerve stimulator (VNS). This device was life changing for him. Caleb has endured many broken bones and a major reconstructive surgery on his feet. This reconstruction performed at age fifteen was wildly successful and he now has straight feet. He still wears AFOs for support, but he always rolls with it. In March, Caleb traveled to Orlando for Epilepsy Day and an LGS walk. He walked over 2 kilometers! This was quite exciting, but the excitement soon turned to fear. On the way home, his oxygen levels dropped below normal and he ended up at an ER in South Georgia. He was transported back to Atlanta and spent the next 15 days in the ICU and then 20 days of extensive rehab. During this hospitalization, it was determined that Caleb silently aspirates when he eats and drinks. After eighteen years of eating by mouth Caleb now had to be fed via a tube to reduce the risk of aspiration and pneumonia. He has handled this very well. In addition, he also has respiratory treatments that must be performed daily to keep his lungs clear. Despite the ailments he continually faces, Caleb approaches life with positivity and a can-do attitude. He never lets his challenges keep him from enjoying new adventures and a fulfilled life. Sunshine on a Ranney Day transformed his bedroom into an abode fit for a champion.

Family Photos

Photography by Niki Murphy Photography

Before Sunshine

Photography by Niki Murphy Photography

After Sunshine

Photography by Niki Murphy Photography

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Photography by Niki Murphy Photography