Tuesday, August 30, 2011

BIG NEWS!!!

BIG NEWS!!!  

We have $25,000 for the CDKL5 Seizure Research Project!!!  A fund is now being established and we will have a page on the Children's Hospital of Boston website sometime in September.  We only have $175K left to raise!  ($75 by December)  :)  

This research project is an amazing blessing and an opportunity to work with World Renowned Epileptologist, Dr Frances Jensen, in an effort to find a way to stop seizures in CDKL5 affected children.  The project is centered around why when the children are ill the seizures stop.  This phenomenon is present in many epilepsy patients and therefore, the outcome of this research project has the potential to help more than just Harper and children with CDKL5 but all those who suffer with seizures regardless of the cause. 

To make a tax deductible contribution to the CDKL5 Seizure Research Project please contact Jessica Miley at 857-218-3191 or jessica.miley@chtrust.org.  Be sure and check to see if your employer does company matching before making your donation.  

For more information on Dr Jensen and her work visit: 
http://www.childrenshospital.org/cfapps/research/data_admin/Site162/mainpageS162P0.html

Other News: 

Harper's medication is now at it's max dose as of Sunday.  We are seeing some changes in the seizure pattern and style.  We will know within in the next week if this medication combination will help with Harper's seizures.

We met with a Neurologist and dietitian specializing in the KetoDiet yesterday for four hours....what a wearing task that was and poor Lily was with me the entire time.  She is the best big sister.  I had know idea the appointment would last that long and she was so good!  I think we are on a good path with Harper's diet trial but it was such a struggle to get there.  Apparently there are two other children in the DFW area that have CDKL5 and I have know idea who they are.  I gave permission to the doctor to provide my information to them so they could contact me.  I posted in our facebook group with no response.  I hope we are able to get in contact with these parents.  Since, the doctor treats two patients with Harper's disorder they were less interested in listening to the issues we are experiencing with Harper and more interested in giving us the same diet the other families use and moving on.  Eventually we reached some middle ground and I am hoping we can gain a bit more seizure control with these diet modifications.  We shall see within the next 6 weeks.


Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)

HARPER ELLE HOWARD - Her Story

Harper Elle Howard was born April 12, 2010 and at just three weeks old, began having seizures. Over the course of 10 months, Harper traveled across the US and underwent a multitude of tests. In February 2011 she was diagnosed with a rare and in some cases life threatening genetic disorder known as CDKL5. There are currently fewer than 300 cases worldwide. Those affected suffer from intense seizures, sensory issues, gastrointestinal difficulties, visual impairment, scoliosis, along with severely delayed developmental growth. For more information on this disorder please visit www.cdkl5.com. The severity of Harper’s particular case is unknown, but we remain hopeful. She has been prescribed intense therapy and seizure control to aid in successful mental and physical development.

Hope4Harper is an organization started to aid in her care. You may choose to help Harper directly with her expenses and although not a tax-deductible, ALL monies generated are used to provide Harper care that might not otherwise be available to her. Option two is a tax deductible option through The Children’s Hospital of Boston. Hope4Harper is working with Dr. Frances Jensen and her team at The Children’s Hospital of Boston on a seizure research project seeking out the best way to stop seizures in CDKL5 affected children. Please view the CHB Project page for more details.

Your support is greatly appreciated and we ask that you keep Harper in your daily prayers, continue to follow her progress and the progress of the seizure research project, as well as, share her story. With your help there WILL be a cure!