Sean is the 20-year-old son of Olga and Bill Gerber. He is a determined and spirited young man with two younger siblings. At this time, Sean’s episodes are triggered by excitement, temperature, fragrance, and other unknown triggers. Sean has the additional burden of wearing nose plugs and a face mask frequently to prevent an AHC episode brought on by pungent scents (fragrance) since this trigger causes full-body paralysis that can last days and up to weeks. Although he was affected from birth, he was diagnosed with AHC when he was one year old.
Although Sean is not able to participate as fully as others do, he enjoys a variety of sports during the different seasons, which is among his favorite things to do. He is an imaginative young man who enjoys playing with figures, eating out, dancing, and singing. Sean also enjoys spending time on the computer and iPad.
Sean loves to be with people and is fond of dogs and animals, but his face lights up when he is near babies and is their gentle, giant teddy bear!
Sean was born at 9lbs, 3oz, 21” at birth after a perfect pregnancy. The next day he was admitted to the NICU for a week because a nurse thought he had a seizure. He had many tests done during a week’s stay at the NICU, and all tests returned, proving he was fine. At about three months old, he had a major episode that mimicked a seizure. We were in and out of the hospitals for days and weeks at a time for a year because he continued to have these spells. After many medications and tests ran, he was diagnosed with Alternating Hemiplegia of Childhood (AHC) by a third opinion at Boston Children’s Hospital. Sean is one of the fortunate children of AHC to have been diagnosed after one year of being affected. The attacks vary with each person. An attack on my son will consist of one eye going side to side, both eyes going up and down at the same time, being paralyzed in one arm or a leg or both arms and legs, and sometimes the episode will paralyze him from head to toe. When he has full-body paralysis, he can sometimes communicate with his eyes. That is how I know he is still mentally with me. When Sean was younger, after each attack, it would take him a day or two to get back to the milestones he had accomplished. He is currently delayed developmentally but strides to improve each day when he is not suffering from an episode.
At the age of twenty, Sean is still unable to use utensils. He must be monitored when he eats because we fear he may choke. Sean can use an open cup for drinking, but it still spills quite a bit. Sean can take off his clothes but cannot dress himself. He still needs much assistance in the bathroom. Academically, he knows some sight words and recognizes and spells his name. At this time, he is unable to write. Sean is in the transition program at a private special education school instead of a typical high school. At school, the focus is to continue with academics but concentrate on daily living skills and, eventually, community outreach. Sean has never been treated differently in our family, and he does not know he is different. Sean has always attended a public school where he was also mainstreamed with typical peers at times. Sean has been attending this school for six years, since his freshman year of high school. Sean has learned about many disabilities and shows compassion and sympathy for his special needs peers. The great advantage of school is that Sean has been able to attend dances independently (without a parent) and make many new friendships. Sean has also received numerous awards, such as “Worker of the Week. Sean has excelled tremendously in his new school with living skills and maturity. However, he will never be able to live independently because of his AHC episodes.
Sean also has occupational, physical, and speech therapy at school. An adult paraprofessional at school always accompanies him. Sean can walk at times but must be monitored in unfamiliar places as he does not notice objects or uneven ground. In the last couple of years, Sean’s balance has weakened. Sean received a bike from the Springfield JCC in April of 2012, and it took him seven to be able to pedal for short periods. This was a huge triumph for him, but he still gets frustrated because he cannot start pedaling himself and cannot go the distance like his younger brother and sister. Sean desperately wants to do and be a part of everything an average person his age can do but is physically limited. Despite his delays, Sean has always had the ability to understand adult humor and sarcasm. Sean has one of the best senses of humor and is delighted by simple things. He can tell jokes and riddles and be witty.
Sean is extremely social, very affectionate and exceptionally thoughtful. Sean can be stubborn, but that determination has made him exceed.
Sean enjoys being around people very much. He has a few special friends. He used to have a couple of typical friends come to visit and play with Sean in his home. This no longer occurs since his friends are older. Due to the excitement of having his friends visit, Sean always had an episode. Sean always has episodes when he is excited. We throw a surprise party for him every year so that he is in an episode for one or two days instead of the entire week leading up to his birthday. Sean understands everything that is going on around him. He can converse, but his speech is not always understood by people not often around him. Sean still lacks judgment and is kept at arm’s length. Sean has exhibited behavioral issues both at home and at school. This may be due to frustration and/or lack of being able to communicate. Sean believes he is affected by AHC because he is the firstborn. Sean despises AHC (who doesn’t) and wishes he was not the firstborn because his brother and sister are not affected. Sean now has the burden of dealing with occasional seizures. However, he is still a very loving child with a heart of gold, a contagious laugh, and a smile full of sunshine.
