October 2021

Edit: Emmett's 22nd lumbar puncture went well. He's at home now and looking forward to a normal day of school ... and rain!

It's October and it is time to focus on videos for this blog. So Fasten your seatbelt and click the links. And if you're wondering about the title "Number 22", keep reading. The focus on this issue of our blog is upon the joy that Emmett finds throughout his life. The joy that he shares with everyone around him! He is an amazing six year old and, like many of you, we absolutely find him to be our inspiration. Emmett's videos are of three of his favourite hobbies - Soccer, Horses, and Camping.

Why Number 22?

On October 27 Emmett will be getting his 22nd lumbar puncture and dose of the drug Spinraza. The focus of this drug was to stop the regression that was happening to the recipients' body. At 6 months of age Emmett was limited to slight movements of his right arm and turning his head from left to right. He could not sit up, lift up his head, and was having issues swallowing - to mention a few of the challenges he faced. All because Spinal Muscular Atrophy Type 1 was shutting down the pathways between his brain and his muscles; the result being that his muscles atrophied. Spinraza provides an alternate route - and we have said many times before that not only has it stopped the regression but it has reversed it. It isn't as good as the original because by the time Emmett received this treatment the path was too deteriorated to recoup everything. We have seen some really incredible results in infants who have received the drug at just a few days of age. And now there are two other drugs that are available - which is incredible because when Emmett was diagnosed in 2015 there was not a single treatment available. These videos show Emmett participating in activities that prior to the introduction of Spinraza in 2015 would have been virtually impossible for someone with SMA Type 1. This 6 year old boy works incredibly hard to do what he does. And he has so much fun and such an incredibly optimistic outlook. And we are so blessed with his medical team, his family, and his friends. We are so thankful!

BTW, Emmett knows that he needs the "POKE" but he do not be mislead into thinking that it is all smooth sailing. He intensely dislikes it.  If you're thinking about Emmett and the "POKE", send him a message by responding here or on FaceBook! We will probably read all of the comments for a reading class. And then add up all of the comments for a math lesson. And if you list your location then we'll look up all of the locations on a map!

and here's an old horse video that you may enjoy!