Go Jonno Go!

Our 9 year old needs treatment for an autoimmune illness currently called pediatric autoimmune disorder associated with strepticocus...or autoimmune encephilitis for short.  The next part of his healing journey involves travel to a specialist. So far, we have managed with God's help, treatments that insurance would not pay and lots of Doctor visits that interupt school.  A year and a half ago something seemed different about Jonno. He was behaving in strange sometimes violent manner with ever increasing fear and anxiety as well as tic sounds and movements. We started seeing doctors and exploring medical and developmental hypotheses in hopes of helping him stay in school and become peaceful again.  
It has been a bumpy journey with amazing support from friends, family, doctors and educators. Jonno has improved but is not well.  In Charleston, after several medical and psychcological culdisacs, we began seeing a neurologist, immunologist, clinical psychologist and family doctor who together are coordinating Jonno's treatment. He attends school nearly every day and inspite of appointments and down time for rest when symptoms flare, Jonno is making all A's and is thriving at Springfield Elementary. We have much to be thankful for.
The latest chapter has come with new costs and reduced income. I gave up working for an employer to have the necessary time and energy that Jonno's situation began requiring.  There has been so much prayer and provision all ready!!!  And now more is needed. I will drive Jonno to Wagington D.C. the last week of April to see an expert.  Dr. Elizabeth Lattimer is a very experienced neurologist who has been researching and treating children with this condition for many years.  While it is rare, we have already discovered 3 other families in West Ashley walking this journey with a child as well.  We are not alone. Going forward is likely to involve even more costly therapy. 
Jonno wants to be normal and for his immune system to stop bothering his brain.  I have no doubt that our joyful, brilliant, unique, wonderfilled boy will continue to be captivated by the curious after the OCD and anxiety loose their grip. For now, we put one foot in front of the other and tackle each day like it is new to keep our sanity and peace from eroding. I ask you to keep us all covered in a heavy blanket of prayer and if our need is something you can give to...it will be welcome and joyfully received.