Thursday, April 21, 2011

Unexpected Privileges

HEAVEN'S VERY SPECIAL CHILD

A meeting was held, quite far from Earth! It's time again, for another birth. Said the Angels, to the Lord above, This special child will need much love. Her progress may be very slow, Accomplishments she may not show. And she'll require extra care from the folks she meets down there. She may not run or laugh or play, Her thoughts may seem, quite far away, In many ways she won't adapt, And she'll be known as handicapped. So let's be careful where she's sent, We want her life to be content. Please Lord, find the parents who Will do a special job for you. They will not realize right away the leading role they're asked to play, But with this child sent from above Comes stronger faith and richer love. And soon they'll know the privilege given In caring for their gift from Heaven. Their precious charge, so meek and mild, Is HEAVEN'S VERY SPECIAL CHILD.

by Edna Massionilla
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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!