October 31, 2009
Leah has been doing really well over the past few months. In June we began a new treatment for her seizures. It is a newly FDA approved drug called Vigabatrin. This medication has decreased Leah's seizures by about 95%. Its a wonderful improvement.
Leah has been much happier and stronger with the reduction of seizures. She smiles more and babbles all the time. She has developed a very strong personality towards what she wants and doesn't want. Leah has also begun to use a walker and has actually taken some steps in it. We are so hopeful right now and seeing such great things from her.
In September, I along with 7 other mothers with children conflicted with CDKL5 have started a non-profit organization. The International Foundation for CDKL5 Reasearch-From Cause to Cure will focus on raising funds to help with research, awareness and education. We are very excited about this great step towards a cure. We know we can make a difference for our kids. In August we participated in the 1st Annual CDKL5 Walk-A-Thon. It was held in Richmond, Michigan. Leah raised over $2,000. And the walk raised $25,000. All of the money will go to towards research. We are currently working to put our website together and we will hopefully be up and running by the first of the year.
Saturday, October 31, 2009
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