Thursday, July 28, 2011

Bellow is a note from another CDKL5 family posted in our closed Facebook Support Group.  I am sharing this with you so that you can a) pray for this family and Lexi, as well as, b) have a better understanding of the severity of the condition Harper battles daily.  Each child is different and very few have the exact mutation of the CDKL5 gene.  Some of the children's level of severity is worse than others but the possibility is always present because so much of we are battling is unknown.  May God bless each of the 300 families who share Harper's journey and give them strength and peace with each passing day. 
 
Amy Morrissey
Sorry I've not been around for awhile... I've been going through a tough time with Lexi in hospital and had to take a break for soul searching, decision making and accepting my decision. It was found out that Lexi's right diaphragm is not working making it impossible to breath without some mechanical support. She had a trach put in on Mon and we will be in hospital for next 4-6 weeks, determining level of support she will need and whether or not she can have breaks off vent throughout day... That being said her surgery went well and she is doing really great once again my hero!!!! Since the waiting the surgery it has all been anti climatic. Its amazing that something so life altering has been her easiest procedure to date. She has been totally stellar and it is so good to see her face and she is so much more comfortable. Everything is going to be good will just take some time. Please keep us in your thoughts and prayers as this is a difficult journey for Lexi, myself and our entire family.
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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!