Help for Jude

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?

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

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!