Sunday, July 10, 2011

Meeting Madi

We had a wonderful trip to Austin this weekend.  Harper's lessons went very well and as always we enjoyed our time with family.  We were able to meet The Thompsons and their beautiful baby Madi!  After preparing long and hard for there Milestones for Madi Event which turned out to be a success, they took time to come meet us and view one of Harper's Anat Baniel Therapy Sessions with Chris Elms.  What a wonderful family and beautiful baby girl.  

In case you haven't noticed we have made some updates to our site that I would like to point out on the right side of the page:  1) you can now follow us via email  2) We have Hope4Harper T Shirts for sale and 3) A quarterly financial summery will be coming soon!  We want all of you supporting Harper's Cause to know exactly how your funds are helping Harper achieve her success! 

Also please note the update on the August 5th Fundraiser displayed in a previous blog:  We are no longer charging for people to attend.  Please come and bring a friend.  It will be a fun night with both Live and Silent Auctions and a Raffle for an IPAD2! WooHoo!!

I've included Harper's newest video displaying her ability to understand commands!  Clearly there is a bit of a delay in her processing but that just means she'll be one of those people that thinks before they speak!  ;) 
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1 comment:

  1. Melissa AdayJuly 11, 2011 at 7:47 AM

    I want to see the shirts!!! :) So excited for all the ways God is working!

    ReplyDelete

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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!