Friday, June 10, 2011

Update 06/10/11

We are off to Austin this afternoon for ABM therapy lessons with Chris Elms.  He has offered us the opportunity to prepay for 20 lessons and receive a discounted rate of $100 per lesson rather than the usual $140 per lesson.  This is great news!  However, this means I am in need of someones help in coordinating another fundraiser sometime in June or July as our next fundraiser isn't scheduled until August!

Our Hope4Harper bank account has a total of $2532.14.  


We will be spending $2000 of that this weekend on our ABM lessons.  The yoga therapy price is actually $76 per lesson or $331 per month which is about $70 more per month than I originally anticipated.  We have paid for Yoga through June.  After this weekend Harper's account will have $532.14.  

Her expenses for June left to pay are: $1360.03
$260 Communication Therapy
$450 Aquatic Therapy ($150 a session starting June 14th)
$500.03 Medical Bills remaining
$150  Keto Diet

Harper's July Expenses scheduled are: $1341
$260 Communication Therapy
$331 Yoga Therapy
$600 Aquatic Therapy
$150 Keto Diet

Any fundraising ideas are welcome and greatly appreciated!
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Diet Update: 

We are still fine tuning this thing!  We currently have Harper on a Carb Free diet.  Her blood sugar is stable, for now.  She is finally in Ketosis which means we should begin to see some seizure improvement very soon.  I am looking for a well known Metabolic Specialist to speak with about Harper's case.  I am also looking for a person who specializes in taking large amounts of data, organizing it and searching for patterns in it.  Any ideas on who to start calling would be great!
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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!