I have always believed that I was born disabled for a reason. As a young girl, I felt that if people saw this little girl with cerebral palsy, who was doing her best to run around and play with a smile from ear to ear, that they would realize that they too could be positive and happy no matter what challenges they faced.
These days, I feel like my purpose is so much more than that. Yes, I still want people to look in the mirror and tell themselves that they have so much to be thankful for, but I also feel like I need to help others in a way that others can’t. By writing this blog, and having my FB page I hope to raise awareness about Dopa Responsive Dystonia.
When I recorded the affects of coming off my l-dopa. my hope was that one person would see it, think it resembled themselves and then talk to their doctor about doing a trial of this “miracle drug.” As I mentioned before, the video has helped two women, but today I was told that it has helped several children.
Knowing that I had a part in changing the lives of children who want to run and play, but couldn’t, brings me more joy than one could ever imagine. I can’t help but think about their excitement as they run on the playground with the other kids at school. The kids that they likely looked at with awe and wondered how do they do that? And then I think of their parents…are they able to sleep better at night knowing their child is on their way to a more active life? Are they worried and wondering how long will this last? And that’s when I begin to pray. I pray that these families are able to adapt to all of this without worry and are able to really enjoy every moment of their new lives.
After living the first 33 years of my life thinking I had Spastic Diplegia, a form of Cerebal Palsey, I was correctly diagnosed with Dopa Responsive Dystonia (DRD). I am on new medication and doing things that I never imagined possible. This has changed the lives of my husband and two daughters. I truly believe that I am living a miracle each and every day. Life can't get any better than this!