"SAVIOR, He Can Move the Mountains...."

We have some exciting and very emotional news to announce!  I have briefly mentioned it in our past posts but now it's officially moving forward and we NEED you guys now more than EVER BEFORE in prayer.  

Over the last 15 months I have watched Harper have seizures multiple times a day for up to 10 minutes at a time just as other CDKL5 parents have experienced and learned to live with.  I have tracked her patterns, changed her medication, modified her diet all with very little success.  In working with the wonderful support group of parents we were able to determine  that for many of the children when they are ill their seizure activity declines or stops.  Then as their body returns to normal so do the seizures!  And there should be nothing normal about your child having seizures!! 

With this information in hand, I contact Dr Frances Jensen world renowned Epileptologist from Children's Medical Center of Boston.  Dr Jensen is the Director of Epilepsy Research, Senior Associate in Medicine and professor at Harvard Medical School.  Her research is specifically geared towards age specific seizures.  She is willing to address the questions of illness related to seizure activity specifically centered around CDKL5 disorder.  This is Fantastic News!! 

Even more phenomenal in the research world is that in her rough estimate we are looking at possibly being able to being this study as early as January 2012.  The project is estimated to take 1.5 to 2 years.  She is currently discussing with her colleagues  the specific group of experiments necessary to evaluate this relationship between illness and seizures for CDKL5 disorder patients.  

My goal with this project is to find a way to stop the seizures not necessarily cure CDKL5.   I am expecting exact project details, time line and budget in the next couple of weeks.   At which point, Hope4Harper will sign a commitment with Children's Hospital of Boston to provide the funding.   Good and Bad News surrounding this.......as of now it is estimated to cost $200K for this to happen, half of which has to be paid in 4 months!  Here's the good news.....the hospital will create a fund for Hope4Harper's project and anyone will be able to make a TAX DEDUCTIBLE DONATION to Children's Hospital of Boston and designate their donation to HOPE4HARPER"S PROJECT!! This project is currently geared toward CDKL5 patients of which there are only 300 in the world, but has the potential to help thousands of epilepsy patients in the future and with it's completion will lead us one step closer to a CURE! We are open to fundraising ideas, suggestions, assistance and please prayer!   For more information on Dr Jensen, her Laboratory, her Research or Children's Hospital of Boston please visit the following link:  http://www.childrenshospital.org/cfapps/research/data_admin/Site162/mainpageS162P0.html

Progress

Harper development is progressing nicely but slowly.  She really starting to get the hang of using a straw and gaining better truck and head control for independent sitting.  She is displaying of love for musical toys with effort from her to make them play.  She is gaining weight helping to make those muscles strong.

We are still working on control her seizures.  If this new medication combination is going to work we should see some improvement with in the next couple of weeks.  We have been led to a wonderful and exciting opportunity to work again with Dr Jensen of Harvard Medical School in Boston but this time in a research project to benefit the majority of CDKL5 patients including Harper.  We should have details ironed out within the next couple of weeks.  We are in need of prayer for direction!  This project will be expensive and we will need to find a way to generate funding but it could lead to the answer in how to stop the seizures for CDKL5 disorder patients.  This isn't a cure, but it's definitely a help and a step forward in the right direction.