Tuesday, May 3, 2011

Hope and Hopelessness

Yesterday we traveled to Fort Worth to see Dr Kukolich, a Geneticist with Cook Children's hospital.  She has three other CDKL5 patients that are boys, which is very rare.   The visit didn't tell us anything new and profound.  Doctor's do not know what function the CDKL5 gene serves for our bodies.  We will know more about what Harper's future might look like in the next two crucial years of development.  Seizure control and intense therapy will be key for her.  Dr Kukolich said we are shooting for Harper to be an interactive member of society and the reality of her being able to function independently is extremely low.  But you know Doctors also said, my youngest sister, Briana's  outcome did not look promising 15 years ago and she's the family "Super Star" ;) graduating this June and heading to Arkansas, "Go Hogs!"

As long as there is GOD, there is ALWAYS HOPE!
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3 comments:

  1. GabrielaMay 3, 2011 at 8:52 AM

    This is what our neurologist has told us about Julia. My HOPE was dashed and now I am trying hard to get it back. All my love to Harper and a big hug from Julia.

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  2. KathyMay 3, 2011 at 11:00 PM

    Penny, our prayers are with you all. Wendi & John keeps us informed & now I am following your blogs. Preston & I are telling others the story of Harper. We also requested prayer for her in our Sunday School class this past Sunday. Love & prayers, Kathy

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  3. Jenny ClarkMay 3, 2011 at 11:10 PM

    Ive worked with special needs kids my whole life. I love them and KNOW they are a gift. The remind us to be thankful for little things, to rejoice in each day, and most importantly, how lucky we are to know them. Keep faith, recognize it isnt what WE imagine that matters, but what we believe. Love to you,
    Jen

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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!