CultureMash

A group of young professionals  with the desire to give back to our community and share their skills and success with new media is set to launch Dec 2nd at a kickoff event at Wright State. More details here.

But even before they’ve launched they have jumped into action helping with a campaign to help a local family get visibility and help for their young son who suffers from unexplained seizures.  The story itself is heart wrenching, as you’ll read below.

But what makes this story more relevant is that while facing so much in his personal life, David Bowman has spent years touting the influence of social media.  He’s perhaps our area’s most respected and giving authority on new media.  Several years ago when I first launched DaytonDining as a ning site, I needed help.  I had seen David’s name around town and knew he had experience with these sites.  I emailed him, offering to pay him for help and within the hour he emailed back, with the help I needed and even more resources for me.  And wouldn’t even think about taking my money.  In subsequent meetings, he proved that he’s truly all about spreading his love for social media and his dreams of educating the Dayton region into being a hub of experts in new media.  He is the driving force behind the creation of Summitup, which just held it’s 2nd annual social media conference last month.  He’s a man that makes an impact.

As Richard J. Kaiser put on his facebook page, “I thought about leaving Datyon..if you want to thank the man who kept me here, please sign up to Send Jude Bowman’s Story to Ellen Degeneres…David Bowman is the reason why I’m staying in Dayton and continuing to help make this city great!”

So now it’s our turn to use social media for good and ask you to help. If you are interested in participating in this effort, a copy of the letter they drafted is below.  Simply copy it, print it, and mail it to the Ellen show.

Ellen DeGeneres Show

Attn:  Kara Hogan

4000 Warner Blvd. Building19

Burbank, CA 91522-0001

Dear Ellen,

We are the many friends and family members of the Bowman Family.  We are all coming together to ask for your help for their four year old son Jude.  We realize that there are millions of people in the world facing difficult times, be it financial, personal, or medical.  We know that some problems seem more at crisis levels than others, but to each of these people and each of these families, finding help is paramount.  This is the Bowman’s story and our plea for help for them.

Upon meeting Jude, one might never suspect or imagine that he is anything but a happy healthy child.  He is handsome, charming, funny, and bright.  However, spend more than a passing moment in his presence and one would most definitely become confused and maybe even a bit uncomfortable.  Jude’s eyes often roll uncontrollably upwards, he will lose muscle control, enter into a coma-like stare, and frequently fall unconscious for several seconds at a time.  His parents, David and Colleen, will hold him until the episodes pass, as if nothing is happening, because it has become the family norm.  It is a scary experience for anyone to witness, but even more so when you realize that the Bowman’s have no way of explaining why this has happened; they themselves have no reasons, or explanations.

Jude has undergone virtually every neurological test.  He was initially diagnosed with epilepsy and was treated with six different medications, including rescue drugs, to treat what the Bowman’s were assured to be seizures.  After two years of experimenting with different combinations and doses of medications, the Bowman’s realized that the medications were not helping to control the “seizures”.  The symptoms and aftereffects of the “seizure” activity were increasing in occurrence and severity.  None of the medications stopped the “seizures” from occurring or made Jude’s life any more normal.  While taking these medications, Jude would become disoriented.  He would not recognize people or things in his own home environment.  He continued to experience involuntary eye movements in which his eyes would roll up into his head, often followed by instances of collapse.  The family has called the paramedics numerous times as he has stopped breathing in their arms.  He has been hospitalized six times in two years and has been studied under video monitoring four times.  Jude has experienced more testing than any child should have to endure.  The most difficult part of the testing has been the outcome; all of the results have been inconclusive.

Disoriented, confused, lethargic, isolated, uncoordinated, and frustrated are not words one would wish to use to describe anyone, let alone their four year old child.  Watching Jude with other children is heartbreaking.  His energy level is no where near that of the children with whom he tries to play and he can often be found sitting by himself like an outsider.  He often collapses while walking up and down stairs and there are some days that Jude loses control of body movement and has to be held.  There are many periods where he cannot identify Colleen, David, and his sister Ella.  He frequently asks Colleen and David to help him and all they can do is hold him while his mind and body break down.  Most people have had to watch their children struggle with something at some point in their lives; the Bowman’s spend every day watching Jude struggle with everything, from eating dinner to running through the backyard.  The powerlessness they and everyone who knows and loves Jude feels is all consuming.

Jude and the Bowman Family could use a helping hand.  The past four years have been filled with great happiness and life experiences for the Bowman’s.  That same four years have been filled with fear, anger, acceptance, constant doubt, medical research, medical testing, foreign medical jargon, and sadness.  Jude has been diagnosed with everything from benign reflux,  severe epilepsy, Paroxysmal Tonic Up-gaze (PTU), to the most recent diagnosis: unknown.  The Bowman’s have trusted in medical professionals who have medicated, over and over again, a baby who could not even walk or talk, to a four year old who can’t even begin to look forward to starting school next year as his condition continues to slow his physical abilities.  Jude’s case does not seem to fall into a clear diagnosis, so he is passed from doctor to doctor with still no results.  Colleen and David have begun their own quest for answers.  With limited resources, their path toward any resolution is quite daunting.  Obtaining all of Jude’s medical records has become a monumental task.  Hours upon hours of research has been logged every night.  They have applied for a service dog in the hope that Jude can develop a bond with someone who can help him during these episodes and help to create a small bit of independence for him as he gets older and more aware of his condition and limitations.  The financial, physical, and emotional toll it has taken on their family must be overwhelming.   As I watch their family struggle day after day, I am inspired by their courage and spirit.  I am trying to extend a much needed helping hand and am hoping you or someone you know might be able to help them as well.

If there is anything we would ask of you, it is simply for exposure.  Exposure so that the Bowman’s can hopefully find a cure for Jude or ultimately find answers and treatments that will enable Jude to live a healthy fulfilling life.  We fervently hope that one day soon, someone will see Jude’s story and be able to help.  Thank you for your time and consideration.

Sincerely,

Friends and Family of Colleen and David Bowman