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By Sherri J.

Hi!  When I learned in 2006 that I had von Willebrand Disease, I was very surprised but relieved to finally know why I was having complications that the doctors could not explain.  Then one day as I was driving my son to school, he called my name as blood was pouring out of his nose.  It scared me but I could not be afraid as my son was evidently frightened.  I pulled over as soon as I could and tended to him.  Approximately ten minutes later the bleeding stopped as quickly as it had begun.  I took him to school only to receive a call 30 minutes later that his nose had been bleeding for a while and the administration was not able to get it to stop.  I immediately made an appointment for him with his primary care doctor; he was referred to Pediatric Hematologist Dr. Ameri. 

The staff was very caring and understanding.  Mrs. Crenshaw really went out of her way to help me begin to really understand as we were informed that Jairus also has von Willebrand Disease.  The staff at the Hemophilia Treatment Center in Augusta introduced us to Hemophilia of Georgia (HoG).  HoG’s nurse Mary Ann has been a very strong advocate in helping me by visiting my son’s schools to teach them about his disorder.  She brought materials for the staff and provided the expertise that I lacked in getting them to understand my son’s diagnosis.  What was even better is HoG’s  genuine effort to get family members to come together to show the support for our children so that they can see that there is nothing wrong with them, there are just additional precautions necessary for their safety. 

As I am retired military with a decent health care plan, there are HoG services that my family does not use but that does not matter because my son is treated very specially, just as I have noticed of all of the children.  What makes HoG even more special to me is that my son has never and still does not go anywhere without at least one of his parents.  But, HoG has created such a place of safety that my son went to his first overnight camp in 2011.  He had so much fun that he wanted to go again in 2012 and we were fortunate enough that he was selected.  HoG has helped my son to begin to open up from his shell.  There is still work to do but we are going in the right direction.  Jairus is not afraid to tell people why he wears his medical alert bracelet. He looks for the signs of bruising and how he feels so that he is able to let an adult know that he is about to have a bleeding episode.  Awareness is what he has learned. 

My family and I are very appreciative of the yearly Christmas parties, the Thanksgiving meals, and annual get-togethers as they have given us an opportunity to connect.  It is for these reasons and so much more that I want to try to give something back to an organization that has and continues to be here for my family.  I work full time and between the children’s activities, there is not much time for myself but because of HoG, what they stand for and what they actually do, I have volunteered to try to help as they put on their first Trot to Clot Walk and Run here in beautiful Augusta.  If we all remember and give back to those that give to us regardless of how small or big then maybe together we can accomplish even more.  HoG thank you for your continued support and the happiness that you have added to my son’s life.