Disney to thank a million times over or a Midday update Before we begin we wish to just let our old and new friends know a small bit about Gabriel. Gabriel is the happiest 2 year old you are yet to meet. His smile is preeminent and he can cheer just about anyone up. However even with all the love we can give him he hides a secret. Gabriel has what is known as the most uncommon - common Genetic killer of children in the world. He has Spinal Muscular Atrophy. When he was 9 months old he was a happy healthy little boy. But by a year that had all changed, he was dragging his left side, and could barely pull himself into a kneeling position. He has since seen nearly 20 doctors and several specialist who all stood at a loss to find out what was wrong, that is until one doctor ran a battery of test over and over seeking an answer. After hours of test and tons of question the results were in Gabriel had SMA type 2. Though we have learned a lot along this journey we were shocked by how we found out, see the Dr told us the worst Gabriel would die by age 5 or 6. We however have great faith and have learned that no two cases of SMA are the same so Gabriel is going to live a great life. Since he was diagnosed he has become wheelchair bound, has been placed on breathing treatments, had to have a feeding tube put in and spent nearly 100 days in the hospital. SMA is no friend and is very unforgiving. There is currently no cure and though there is hope despite many claims it may well be years before a real cure is found. BUT despite all this Gabriel is awesome and we will beat this.... Together as a family and with all of you our friends behind us everyday. Now to tell you why Disney earned a million thanks today. The above was written by Daddy :-) Like a good Phineas and Ferb there is a great backstory to todays story. Yesterday while at the West Town Mall location of the Disney Store we got the chance to meet Serena who asked about my wheelchair. Mommy and Daddy told her about me, SMA and our awesome trip to Disney World back in August. Daddy mentioned that I dont get to go out too much since if I get sick its not good for me and the winter time a lot of germs are out there. That is when Miss Serena mentioned about doing a special storytime and having yours truly be the grand marshal to kick off the 2014 Disney Story Time. This made me super happy and thrilled to hear this. I was so excited that I could barely go to sleep last night. However I did fall asleep and sleep I did. We woke bright and early this morning for my adventure. Mommy got me some warm clothes on since it was very cold this morning. And were off!! Im rolling, rolling and I am heading to adventures galore at the Disney Store . First I have to roll thru Dillards Department Store where there are all sorts of bright colors to distract me but I persevered SUCCESS! I have made it thru the maze of smells and bright colors to get to the main part of the mall itself. Past one store, two stores, three stores, four stores...finally I am at the Disney Store. When we got there the cast was waiting for me to kick off storytime. Miss Erin read us a story based on the movie Planes, a story about Spiderman and a lizard who was a really bad guy and a story about Mickey Mouse Club House. This was even more awesome when Mr.Matthew gave me my own special bag complete with a special certificate just for me and gold doubloons. I got to play with a really cool light up toy that the kids next to me had. It was a spinner thingy that twirled and had flashing lights plus it made noise. Anything that has lights, noise and spins is a winner in my book. Oh and Mommy wants to say a special Thank You to Mr.Matthew at the Disney Store. Nickolaus accidentally left his stuffed Dusty from the moviePlanes that we got in Walt Disney World in the store. Mommy went back to see if she could find it and asked if he had seen it. He helped Mommy find his Dusty in one of the bins of stuffed toys for sale. Ill tell you more about my awesome day when write tonights post.
Posted on: Sun, 19 Jan 2014 00:36:05 +0000
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