So much has happened recently, and our Blog has literally collapsed. After over 8 years we have moved Emmett's Journey to a new setting and, in the process, discovered that the unique way our previous blog was set up meant that we couldn't transfer it. Thus we have to rebuild. But don't worry, we have all of the entries saved. Now we just need time to rebuild - it will take weeks!

But that isn't the big news. The big news is BIG. In fact, it is HUGE. In fact, it is INCREDIBLE!

February 15, 2024 was Emmett's last lumbar puncture. That was, to the best of our knowledge, his 32nd lumbar puncture. Even if you haven't been a regular reader of our blog, you can fully understand when we tell you that Emmett absolutely hates lumbar punctures. They are the worst. But that is how the incredible drug called Spinraza is administered. The lumbar part of the journey has been a challenge for all of us but the benefits of Spinraza have been so amazing that even Emmett knows the value.

But that all changed 24 days ago.

24 days ago Emmett received his first shipment of the drug Risdiplam, which has it's main name Evrysdi. This is an oral drug, or in Emmett's case a drug that gets administered through his G-Tube feeding port, that is taken daily. At home! And no more lumbar punctures!

While Spinraza was the first treatment approved for Spinal Muscular Atrophy, Evrysdi was not far behind. Emmett's neurologist at BC Children's Hospital is very positive that Evrysdi/Risdiplam will continue to benefit Emmett. Quite possibly it will target his fine motor skills (not just hands but also speech and swallowing) even better than Spinraza.