Wednesday, October 5, 2011

Well this weekend was a busy one.  Harper went to cheer on her BIG SiSTER, Lily at her second soccer game of the season.  Lily did much better as did Harper!  There was no crying from either of them.  WooHoo!!  ;)  Aunt Breezy came back in town for a visit from college.  Lily loved that!!  We also went to the GREAT STATE FAIR OF TEXAS and had a super fun time on the rides and eating tons of fried food!  Poor Harper could not join us as she does not have adequate equipment to ride for long periods of time comfortably so she stayed with MoeMoe.  :(  Sunday we rested and tried to kill Lily's sever allergies and prevent them from turning into a sinus infection on us...that didn't work!  She has missed two days of school this week and a soccer practice but is getting much better.  Harper is doing a great job learning to eat solid, pureed, foods with a spoon!  We now know why you start this process very early as she has bit her check and tongue in this learning process and now proceeds very cautiously when taking bites!  We have made some medication adjustments and are as always hopeful to see some improvement soon.  

You'll have to check out our facebook and twitter page we have a few good events our there we'd love for you to join us at.  
www.facebook.com/hope4harper 
http://twitter.com/#!/Hope4Harper

For detailed project information and to make a tax deductible donation please visit the link below:

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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!