Tuesday, March 22, 2011


Harper is doing great!  She spent yesterday experimenting with her voice!  Fabulous expect she decided to start at 4:30AM!!  Today she is back to rolling over.  We are so grateful for the opportunity to be able to bring Harper here but I miss my little Lilygoat!  I know she is adjusting well and enjoying her Daddy time! 

On Wednesday March 16 one of our CDKL5 families experienced the unexpected sudden loss of there 4 year old daughter, Mia.  All of our hearts in our small CDKL5 group ache for this family and there loss.  It is a reminder of how risky it is to help our children battle this disorder.  Although saddened for the Johnson's I am very encouraged by there strength of 4 years in doing what was needed to assist their daughter in leading as normal a life as possible.   Peace be with you!


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1 comment:

  1. UnknownMarch 22, 2011 at 9:56 PM

    My heart breaks for the Johnson family. Lifting them up in prayer. So thankful that Harper is responding to this treatment. She is a sweet little pumpkin. Sending you lots of hugs and prayers.
    Chris, Heather and the girls

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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!