Monday, August 15, 2011

Progress

Harper development is progressing nicely but slowly.  She really starting to get the hang of using a straw and gaining better truck and head control for independent sitting.  She is displaying of love for musical toys with effort from her to make them play.  She is gaining weight helping to make those muscles strong.

We are still working on control her seizures.  If this new medication combination is going to work we should see some improvement with in the next couple of weeks.  We have been led to a wonderful and exciting opportunity to work again with Dr Jensen of Harvard Medical School in Boston but this time in a research project to benefit the majority of CDKL5 patients including Harper.  We should have details ironed out within the next couple of weeks.  We are in need of prayer for direction!  This project will be expensive and we will need to find a way to generate funding but it could lead to the answer in how to stop the seizures for CDKL5 disorder patients.  This isn't a cure, but it's definitely a help and a step forward in the right direction.
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)

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!