Thursday, October 13, 2011

Emotional Week

October 12, 2011 Harper Howard at 18 months: 



It has been a very emotional week for The Howard House!  The hardest day was Tuesday October 11th, the day before Harper turned 18 months old.  I had finally made some time to switch out the clothes for both girls.  Packing away the ones that no longer fit and digging out the ones that are the appropriate size for changing season.  Lily's was easy and I did her first without really thinking this task would become an emotionally difficult one for me!  But Harper's quickly became very difficult to complete.  I was unpacking clothes that Lily used to wear.  It is very hard to see the outfits and remember what Lily was doing when she wore them and seeing that Harper is no where close to reaching those milestones.  What made it even more emotionally challenging was reflecting on the fact that when Lily was 18 months old this is the picture we had made for our family: 


I had no idea at that happy time that in just nine short months our lives would forever be changed and we would be facing the most difficult challenge ever placed before our family.    

A friend of ours, Jamie Woods, has been working so hard to get Harper's story in media to help spread the word of her much needed seizure research project to help her become seizure free.  Jay Gormley with Channel 11 came Friday evening and filmed our family and Harper's story.  You can watch this emotionally embarrassing (for me) but really well done news cast that aired this last Tuesday and Wednesday at the following link: 

I am not sure how many of you were able to see the Today Show two weeks ago about the Handicap Dog they named Harper who was not expected to live but with intense therapy survived and is thriving.  This story can be viewed at the link bellow: 

Now the organization, The Dolly Foundation, who is currently puppy Harper's home and rehabilitation center is located in Orlando, FL.  My husband, Dustin, and I were scheduled to travel to Orlando on a business trip leaving Friday October 14th.  Well thanks to so many people who have worked very hard over the past week the two Harper's now have an opportunity to meet!!  Being as Harper is under two and free to fly adding her to our trip was easy.  Taking her on the trip will not be as easy but very much an opportunity we do not want to miss.  So this Sunday October 16th Harper the handicap puppy surviving and thriving will meet Harper the baby at the Hilton located at the Walt Disney World Resort.  The event has been made open to any media that would like to cover the hope and love extended to both Harpers.  We look forward to meeting many caring and wonderful people that devote there time and effort to helping others animals and people alike! 

Check out our facebook and twitter page at:
http://twitter.com/#!/Hope4Harper

For detailed project information and to make a tax deductible donation please visit the link below:
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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!