After Nathan was diagnosed in July of 2010 we wanted to get involved and learn as much as we could about Angelman Syndrome, and help raise awareness so we joined the Angelman Syndrome Foundation. I found out the closest walk was in Ft. Lauderdale, so I volunteered to coordinate the ASF walk and bring it here to Orlando for the very first time.
Since Nathan was still newly diagnosed and we were still trying to figure it out, we had many trips to the hospital for his seizures that would come in clusters until I took out the Gluten (wheat) and dairy from his diet. He will occasionally get seizures when he gets a cold or fever, but they are no longer regular and no longer in clusters. His attention has improved greatly and his learning also continues to improve thank you to our Speech, Occupational, & Pysical Therapist.
So far from my own family in Los Angeles, I was not sure how I was going to coordinate everything for I had never done anything like this before. I knew some how, some way, it could be done. I knew that the struggle we went through to get the diagnosis, we couldn't be the only ones. I was encouraged by my friends and family and AS family friends on Facebook. I reached out to my circle of influence and it began!
The day finally arrives and many volunteers that I had not know of when I set out for this suddenly appeard, it seemed. Water and snacks, signs and overhead tarps were all ready!
So many people registered online and almost all showed up! Set up went great, we got everyone registered and to my surprise we had in attendance Dr. Charles Williams, board member of the Angelman Syndrome Foundation and who is very involved in the research and healthcare of our Angels. I had sent him an email with a personal invitation, along with Dr. Weeber, but was unsure if they would show up. Dr. Weeber was unfortunately out of town that weekend, but would have love to attend.
I met so many amazing families and beatiful little Angels, I just had to hug them all! Here are the pictures of the event.
I was so happy to have the opportunity to share with the local community about Angelman Syndrome and there was a lot of people who came up to ask about what we were doing and what is Angelman Syndrome.
I thought for sure I was going to get choked up when I said my little speech, but since I didn't have a mic I just kept it short. We had a great time and I felt like I was walking on clouds after the event, I was so happy to have met everyone and our Angels did pretty good in the heat and the weather was pretty nice. We were able to raise over $10,000 in Oralndo and over $917,000 Nationwide!! My heart was filled with gratitude. I also learned so much about how I can make it better for next year and I already have committments from many of my volunteers and new friends.
Thank you so much and I offer to any families of AS, I would also like to share your story and experience with either the walk you attended, and your experiences with Angelman Syndrome.
Sincerely,
Lizzie
