Tuesday, September 27, 2011

From the Heart....a Hard Reality to Grasp

Harper has been more peaceful since last Thursday when we added Ibuprofen to her daily medication routine.  She is now no longer crying all day long.   With all the testing we did the week prior: 24 hour Video EEG, Ultrasound, and Endoscopy, we are relieved to know that none of her major organs have issues.  
However, she is still battling seizure control.  The frequency, severity, intensity and type change frequently.  It breaks my heart every time it happens.  You can see the confusion in her face but have no way to explain to her what is happening and no explanation to comfort me while I love her through the seizure as to why this is happening to my child.  If there has ever been a time in my life when there is no since of normalcy to it this is it!  It's not just about Harper and her pain or the pain we as parents feel for her but also the pain of having to explain the concept of  Harper's life long illness to her older sister, Lily, who is only 3.  Tears of sadness and pride overcome me when I hear her play with her dolls and comfort them through a seizure or hear her tell Mrs Amy, our Yoga therapist, how to tell if Harper is having a seizure.  
The truly unfortunate reality to this whole circumstance is that Harper is not the only one suffering from these horrific seizures.  
IT'S NOW LESS THAN 100 DAYS AWAY 
This research project is an amazing blessing and an opportunity to work with World Renowned Epileptologist, Dr. Frances Jensen, and her team at The Children's Hospital of Boston, in an effort to find a way to stop seizures in CDKL5 affected children.  The project is centered around finding the reasons why when children with Epilepsy are ill their seizures can either reduce in frequency or stop altogether during illness.  This phenomenon is present in the majority of 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.
For detailed project information and to make a tax deductible donation please visit the link below:

https://howtohelp.childrenshospital.org/events/pfp/?ProfileID=HH0022&name=hopeforharperhopeforacure

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www.facebook.com/hope4harper 
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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!