So I have been writing in my other blog, but I have a few ideas going on in my mind therefore I started this blog. Luke is my biggest inspiration and with all that the love and support that we are receiving from the community and friends is absolutely amazing, leaving us speechless, and giving me a bunch of ideas.
The road of the future is unknown, we just received a diagnosis of what Luke have, and looks like his improvement depends a lot on the environment that he lives in. We know that is a nemaline myopathy, this is a rare mutation in the acta1 gene.
As you all may already know Carol and I we are endurance athletes for years and I have been coaching for over 10 years. Carol (she does not like me to say this) but she have done triathlons since 12 years old with major accomplishment such as state champion in Brasil, and I have done 18 ironmans with some good results including winning Hits Triathlon Naples full distance, therefore what better environment a kid like Luke with muscle issues could be in? Weird right? I really do believe we choose our parents before we come to this planet. Want to create a better picture? We were suppose to go home on friday the 9/9/16, since Luke was breathing with no support, but because he got tired he needed to go back to a little support breathing. Yes, he needs to build a bit of strength and endurance, isn’t that a big coincidence?
This post is see where we stand at and I will be posting more as we go.