We started off the year running and we are not looking back. Poppy ran behind me for my first official race. I not only finish the race before poppy, but placed 1St for my age division, because who else would win a race but the princess. (Check out the trophy). I was rocking it while poppy was pushing it. I cannot wait to run the next race. Poppy said he would see what he can do but he has some training to do. I think he is getting old but he doesn’t know it.
So here the deal for 2023, the blog is about my life so let’s get real. Each month I am going to cover not only the fun stuff but some of the real parts of my day that not so much fun. This is all going to tie into my poppy crazy adventure for 2023. He decided to run a very long distance of 26.2 miles. He calls it a Chicago Marathon. What ever that means. I asked if he would push me like he did the last race. He said maybe in the future he would but this is his first marathon, so he needs to do it solo.
So here is the reality for most Dravet Warriors. Little is known about our life expectancy but to many warriors lose their battle having a seizure in their sleep. When someone dies from a seizure it is call SUDEP (Sudden Unexpected Death in Epilepsy). Very little is known about SUDEP but some organizations help make awareness known and help families in need. One organization that poppy has learned a lot from is called Dannydid.org . That is why poppy is raising $1800 for dannydid.org and when he does, he can run his crazy thing called a marathon. So please give.
And before I forget, I just went another 32 days seizure free. While I do not always go that long it is nice when it happens. My neurologist and she has me trying a new medication. The new medication works on the GABA protein and if it works, I will get off a medication that both my doctors and poppy do not like. Problem is it is the medication that helps the most.
Poppy took said he was going take me to see my Boppy (Natascha) he just did not tell me it was going to be at therapy. I did see Natascha but I spent another week at therapy in Kissimmee and that is real work. I know poppy is very proud of me but the only thing I want to do after is sleep. I had a good week with my dystonia and walked over 500’ on Wednesday so I was not really excited about going back Thursday. On Thursday poppy took me to Sea World with Boppy (Natascha) for a few hours after therapy and we road roller coasters. I even went to Sesame Street and I go these cool Abby ears. I had poppy pick up Elmo ears for my buddy Mikey. Mikey was so excited when I gave them to him, I wish you could have seen him smile.
abigaile.org 
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