Friday, June 24, 2011

"Amazing Love...How Can It Be...."


We are so very grateful to people like Martie Cowan and her team at AlphaGraphics of Carrollton for the amazing outpouring of support given to Harper and our family.  To lay the background for those who do not know.  I know Martie and AlphaGraphics through the limited contact we have had from my work at Alpha Energy Laboratories.  I walked into AlphaGraphics in March 2010 with a flier designed to promote the newly created Hope4Harper Cause and simply asked if they would print me 100 fliers that I would pick up in a couple of days.  When I returned to purchase my order, Martie came out of her office and asked me about the flier because clearly it was not Alpha Energy Labs.  I had Harper with me and explained her situation and from that moment her and her team have poured out so much love and support for Harper it is truly amazing.  I had no idea printing companies actually read what they printed but am so thankful they did because it has hugely impacted the Hope4Harper organization.

It is extremely difficult to wake up everyday and watch your child suffer with a disease that carries with it so much of the unknown.  Not knowing if we will ever hear Harper's voice or see her first steps or how long we will actually have Harper as part of our lives is heartbreaking.  Each day we wake up and focus on moving forward and pray and believe Harper will overcome this devastating disorder and grow to be an amazing woman of God and testament to the power of His love.  Her progress though small is visible.  Watch her most resent video and you'll see!  We want to thank every one of you for your support and your prayers.  Your help has made it possible for Harper to succeed!  Please continue to pray for Harper, follow her progress and share her story.  Your help no matter how small makes HUGE impact!  
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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!