Jaydon is now 3 1/2 and doing well. Because of his stiffness in his legs which caused his toes to point he had a hard time walking. He has a heel cord release on both feet at Dupont Hospital for Children in October and is now walking flat footed. The surgery has improved his balance and Jaydon is now jumping and running which is something that we never thought he would do.
He still startles frequently while walking and is afraid to walk alone in public places. He does not walk at all around large crowds in fear of getting startled and falling. He does have the typical Hyperekplexia startle response and will fall like a log to the ground. I am not sure what the future holds for Jaydon as far as school goes or how he will be able to adapt to society but as for now we are grateful for the progress that he has made so far.
Hyperekplexia is a disorder that many more doctors need to be made aware of. As I take Jaydon to various Children's hospitals in search of answers I have yet to find a doctor that has ever heard of Hyperekplexia let alone knows how to treat it. I am on a mission to raise awareness of Hyperekplexia and pull more specialists into this unexplored world of startles, jumps and falls.
If anyone has been diagnosed with Hyperekplexia or has a family member with Hyperekplexia please contact me. I would love to hear your story and together we can become the support that these children need in a world that just don't understand.
