Hurricane Irma just pass by Florida, and this time I had a feeling we needed to Escape. For some reason my intuition said “Let’s go out of Florida”, different than Mathew last year. This was a huge storm, and we wanted to stay together as a family.
Wednesday AM we made the decision to leave, but it was one problem: We have never traveled more than 3 hours with Luke, neither we have had Luke and Bolt in the car at the same time, and that was a huge concern, however we were determinate.
Once we made the decision we posted on the Nemaline Myopathy group where would be a good place to go, so we could be near a good hospital just in case. That is when our luck turned on. A family offer their house in Alabama (including Bolt). We took off at 6 pm and arrived at 9 am in Alabama. We drove non stop thru the night, and our warrior Luke was so brave, he did not even complain.
I usually say there is a positive side in everything in life, we just have to look for it. The trip thought us how to change a trach baby diaper and do cough assist in a moving car. That is right, we did Luke’s care while we kept moving forward.
Once we arrive in Alabama, not only we felt safe and with electricity but we had a pleasure to stay in a house with another Nemaline Myopathy family. Ally and Luke have nemaline myopathy, but the mutation is different however the stories and the struggles are the same. Being able to share this for a week has been a blessing in the sky. We have no words on how grateful we are to this family that open the door to us, but also to be able to share our experiences. The incredible part is that Luke and Ally seems to know each other in a different level. It almost feel like their souls know each other. It was Love at first site! Not only the family received us so well but the the neighbors were super nice bringing us food and checking on us.
The circumstance was not the great because we were escaping from crazy Irma, but the experience end up being the best. Sharing experiences with another Nemaline Myopathy family was absolutely amazing!