A few weeks ago one of my wife’s closest friends, Molly Housh, got together with my sister-in-law Katie Duncan and decided that they were going to try to do something to help my son Jude and my family. The result has been nothing short of spectacular, as friends, family members, business colleagues, and complete strangers have offered their love and support, and gone on to start a movement to find help for Jude. The whole thing has been very moving to me in so many ways. To see so many people, with so many different world views, from so many different places, speak in unison in their expression of love and concern for my son has been heartwarming, inspiring, and simply amazing.
For those who do not know his story, from the time he was an infant, my son Jude has suffered from an undiagnosed neurological condition. His disorder manifests itself in a number of ways. Frequently, Jude’s eyes will uncontrollably roll upward into his eyelids, as he is frozen in an unresponsive, catatonic state for seconds at a time. Occasionally these episodes will cause him to completely lose consciousness and all muscle tone – something that is pretty frightening to witness, especially when it is your child. His episodes can happen up to fifty times a day, almost every day, and without any warning. Frustratingly and frighteningly, we are powerless to do anything to stop it. We can only try to always be there for him to try to make sure he is ok.
Although they have evolved over the years, Jude has had these “episodes” since he was an infant. As a baby, we had him tested for reflux, cardiac issues, gastro-intestinal disorders, pulmonary defects, and any number of other conditions. At 6 months old, we were preparing to put him down for the night when he began projectile vomiting and then went totally lifeless in my arms – not breathing for what seemed like an eternity. We immediately called 911. Minutes later when the paramedics arrived, Jude was seemingly normal again. Jude was taken to the hospital for observation, but they were unable to determine what was going on. This pattern repeated itself over the following weeks, and soon after he was admitted to Dayton Children’s for testing. It was at that time that a Doctor offered a preliminary diagnosis of epilepsy, stating that the episodes were most likely some form of seizure.
That diagnosis led us on a multi-year journey as to the nature of Jude’s problem – a journey that continues to this day. Countless tests for seizure activity came back negative. Medication after medication proved ineffective at stopping his episodes. Exceptional Neurologists at numerous Children’s hospitals saw Jude, ran tests, searched for ways to understand and treat his seizures but, after over 2 years of treating him for epilepsy, we were told that the diagnosis of epilepsy was inconclusive, incomplete, and apparently incorrect. So, we fight on for answers.
Jude’s neurologist now believes that Jude has a neurological condition known as a movement disorder, but we have no real proof and no known cure. There are thousands of these disorders, and little is known about what causes them or how to treat them. We continue to search for answers, but are also growing more concerned with finding ways to help Jude live with this affliction until we can find answers.
A few weeks ago, Molly and Katie came up with a plan to help. Without telling us what they were up to, they asked us for the names and email addresses for some of our friends and family members. They said little more than they were going to try to let our friends know what was going on with Jude, and do something to help us help him.
This week we found out what Molly and Katie were up to, and we were more that pleasantly surprised with the enormity of their efforts. They have organized and launched a campaign to get Jude’s story on the Ellen show in an effort to draw attention to his condition and perhaps find someone who can help him. They have started a letter writing campaign, recruited an army of volunteers, and given us renewed hope in our quest to find answers for our son. They hoped to get 100 people to participate in the campaign. Now, just a few days after they started it, they have far exceeded their initial goal as person after person expresses their willingness to help our family. Other organizations have joined the cause, and people continue to spread the word.
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?
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.
Friends and Family of Colleen and David Bowman
To everyone who responded to my sister in law Katie’s email request asking for help for my son Jude, thank you from the bottom of my heart. I am moved beyond words at your love, generosity, willingness to help.
UPDATE: Just a quick update for visitors to this site, readers of this post, and anyone interested in following Jude’s story. We have launched a website dedicated to telling Jude’s ongoing story. The site can be found at www.helpforjude.com Thanks!