Hope4Harper

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Harper Howard, has 4 to 12 seizures every day.

She is just 16 months old and every seizure erases much of what she has previously learned. As a result she can’t roll over by herself yet, she can’t sit up, she can’t walk, she can’t eat by herself, she can’t talk.

Her parents, Penny and Dustin, are amazing and are providing great care, but their biggest desire is to help make the seizures stop.

Fortunately, their vigilance has caused them to see patterns in Harper’s seizures and parents of other children with CDKL5 disorder have seen similar patterns. They have secured agreement from Dr Frances Jensen, Director of Epilepsy Research, Senior Associate in Medicine and professor at Harvard Medical School, and world renowned Epileptologist from Children's Medical Center of Boston to study this seizure activity specifically centered around Harper’s illness.

Even more phenomenal in the research world is that in her rough estimate Dr. Jensen is able to begin this study as early as January 2012. The project is estimated to take 1.5 to 2 years. They are very hopeful that this research will not only bring an end to Harpers seizures but those of other CDKL5 patients as well.

The study will cost $200,000, half of which they will need by January for the study to begin. Children’s Hospital of Boston has established a fund for this research so all contributions are tax deductible.

I can only imagine how difficult this is for Dustin and Penny, but I also know that in their shoes I would move mountains to help alleviate my daughter’s suffering.

Please help me move Harper’s mountain.
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