Ride the brainwave!

So we are at that time of year when we hope to get everyone to save the date! June 13 will be here soon and we would love you all to come and support my little Zoey bug! For those who haven't read the whole blog, Zoey was diagnosed with infantile spasms at 5 months old. The cause of her spasms is unknown. This disease is a harsh one! It is deteriorating the brain with every spasm. She was having spasms in clusters. Back to back to back for 15-20 minutes. Sometimes 4-5 times a day. Most kids get misdiagnosed. Zoey was one of those kids. If I had not done the research and show videos of my daughters spasms, and really push to get answers, I don't know if Zoey ever would have gotten a diagnosis. 

Most kids diagnosed don't get to learn how to sit up, crawl, or walk. Zoey has been lucky to have accomplished this. She is seeing 3 types of therapists all trying to get her caught up to her age group. This is through the state right now, but as soon as she turns 3. We will be on our own. We have been lucky with Zoey and haven't had her to be hospitalized this year, but even with all the other costs of MRIs, EEGs, doctor visits, medicines, and bloodwork

that has to be done, we are spending up into the ten thousands in 1 year. We are doing okay don't get me wrong, but it's a lot to take. What we are mostly trying to do is to get the word out!!! We went to many doctors who hadn't even heard of infantile spasms!!! That is why it gets misdiagnosed all the time. The best thing for a child with infantile spasms is to get diagnosed early and get the spasms to stop. We need this to get out for all to know and understand what it looks like and how it is diagnosed! The funds we earn will go half to medical expenses and half to the neurology foundation for more research to be done on this crappy condition. 

Join us for a 5k run/walk. Seriously walking is going to happen.. We have kids with all types of disabilities joining in. It's all about the kids! There is also a motorcycle ride that you can do!! For any of these activities make sure you go to www.childrenandtheearth.com register and sign up under team Zoey!!!! You will never meet such an amazing little girl who has a way of touching your soul and yet she can't speak. Spend the rest of your June 13 day having fun with concerts, train rides, food, tons of games for kids and adults! It is a day that you can enjoy as a family and doing something so beneficial as well. Service that would mean so much to my family and yet you and yours get to have a fun time as well. If you can't make it but would like to donate, go to children and the earth website and donate. Make sure to put in the comments that it is for team Zoey! Of course we would love to see you at the race. We will be there. Zoey my little 2 year old princess will be there. Now come join us!!!!!