Dream Bedroom

Seizures, Glycosylation Syndrome TMEM 165

Logan is the name of this handsome fellow and he is going to receive a dream bedroom makeover to help meet his specific needs! Logan is one of six children and was born in Florida. His birth was typical; and, his elated parents took their perfect bundle of joy and their sixth child home to meet his siblings. At five months of age, he began having continuous severe seizures and medicine did not resolve them. He spent two years in and out of the hospital with no reprieve and no answers. Logan was not developing as expected either. He was not rolling over, he wasn’t talking, he could not hold his head up, and could not eat normally. At two, he had to have a feeding tube inserted and unfortunately, the gastroenterologist inserted the feeding tube incorrectly. Logan's mom and dad decided not to replace the tube; just to remove it. The seizures continued as well and he was experiencing up to ten seizures per day even with high doses of medication. Frustration led to seeking answers from specialists around the continent; Philadelphia, Canada and Georgia. It was a neurologist in Philadelphia who suggested they try an innovative medicine in Canada that had promising results. At first, his parents were afraid to try the drug as they had already tried so many with no resolve. However, after the seizures persisted, they decided to try it. After six long weeks of intervention, the seizures stopped. This was such a relief and a blessing. However, the difficulties did not stop there. Metabolic testing revealed that Logan had a congenital disorder named Glycosylation Syndrome TMEM165. This disease is caused by genetic mutations. It is so rare that Logan is the only one in the USA that is known to have this specific syndrome. In fact, it is so rare that the researchers cannot tell his family what to expect for Logan’s future. In addition to this condition, he has a dilated aorta for which he must take daily doses of blood pressure medicine. After five years of traveling across the continent for incessant doctor’s appointments and research, his family decided to give him a break and moved to Georgia for a fresh start. He was enrolled in Wauka Mountain, a specialized school and began services at Emory Genetics, Spine and Orthopedics. Due to his condition, he has endured nine dental surgeries and bilateral hip surgeries. Following the hip surgeries, he was in a cast for eight weeks. When the cast was removed, he experienced remarkable outcomes: he was able to crawl! This was the first time since his birth nine years prior that he was mobile. Currently, Logan is very active and loves crawling around and climbing on furniture. He uses a wheelchair when he is out in the community. He is even learning to walk with a walker at school; but, hasn’t been able to bring it home because it is too wide for his home. Although he is nonverbal, he comprehends what is said to him and loves toys that provide sensory input-toys with lights, environmental noises and music. His favorite singer is Blake Shelton and he always dances to his music whenever he hears it! He enjoys throwing a ball, watching himself turn on a light switch in the mirror and loves to hear people laugh. After all, it is the best medicine. The anticipation waiting on Logan to show up on his chariot was awesome! Being in the country where you could hear everything was awesome once the sound of the motorcycles was heard bringing Logan to make his grand entrance! Chariots Of Fire Motorcycle Ministry of Flowery Branch GA provided an adaptive device to enable Logan to ride. Logan's parents were ecstatic! Everyone was cheering as they pulled in the driveway. We made our announcements quickly as Logan was ready to see his new space designed just for him and included all of his interests! It was a pleasure to work on Logan's space and welcome him to the SOARD family!

Family Photos

Photography by Dinah Sutton Photography

Before Sunshine

Photography by Dinah Sutton Photography

After Sunshine

Photography by Dinah Sutton Photography

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Photography by Dinah Sutton Photography