February 2020

"This is Elijah McBurney. He was diagnosed with BPAN when he was 19 years old. He is now 23. He began his life quite normally, reaching his milestones on time his first year. He was walking at 13 months and just slightly behind in his language skills at that point. At 18 months he got sick with a fever and had his first seizure. His language was also falling farther behind. He was put into an early childhood development program and was diagnosed with pervasive development disorder NOS. He made small gains like eating with utensils at age 5 and by 12 he was beginning potty training. This took two years and still requires reminders from time to time. He began to show weakness on his right side and was determined to be left-handed. He was very skilled at tossing a ball accurately and had good balance skills. At a young age he took an interest in DVD and VHS movies and he never leaves home without an arm full of movies. He has become quite a collector owning hundreds of children’s DVDs. He is proficient in the use of his iPad and owns 4 so that one is always charged and ready to go.

After his devastating diagnosis we became concerned about keeping him strong and started him working out regularly with weights at a local gym. He made exceptional gains over the two years that he spent going to the gym and also learned how to use the Concept 2 rowing machine. Recently he had become moody and difficult to take out of the house, so we started him on Prozac and purchased a rowing machine for him to use at home. This plus use of our home gym equipment daily has brought Elijah back to being more like his happy lovable self. He is truly a blessing for our family, and we want nothing more than to find a cure or treatment for BPAN before it steals from him all of his abilities that he has spent his whole life learning to enjoy."


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