Daily/Weekly Thoughts

November 2023

November Update

It's hard to believe that there hasn't been a post since June. So the first thing is to tell you that right now Emmett's Orange Hippo's are doing a fundraiser for Canuck Place and the goal is to raise $4000 by December 5th. If you want to help out, the link to make a donation is my.canuckplace.org/orangehippos and any size donation is welcomed. In addition to getting a tax receipt, please note that your donation will be tripled by corporate donors. And while the number on the thermometer was correct when I started typing this blog, the actual figure is now sitting at $2725.00 - already above our initial target of $2000.

Emmett has been very busy with Grade 3 and with his commitments to Canuck Place and also the BC Children's Hospital Foundation. Emmett has been on BCCHF's instagram page and was highlighted at their recent Ball. His Mom & Dad attended the Ball (which went on way past Emmett's bedtime) and they were able to share about the very positive impact that the Spinraza drug trial had for Emmett and, of course, their family. Those of you who've been following this blog know that when Emmett was diagnosed with Spinal Muscular Atrophy Type 1 that there was no treatment available. Emmett was invited to join a worldwide drug trial that involved 124 children. Emmett was 1 of 4 children involved in the trial at BC Children's Hospital, so the family's participation in this fundraising Ball was a very appropriate connection. (Video links are at the bottom of this blog after the pics). On December 5th - not coincidentally the final day of his fundraiser - Emmett is planning on attending the "Lighting of the House" at Canuck Place Abbotsford. Emmett has just started working on his special project - and two special projects will be gifted to individuals who have made a donation to the Orange Hippo's fundraiser.

November also saw the completion of his long-awaited All-Terrain wheelchair. The initial idea came from pictures of other all-terrain chairs and our two week trial of a Hippocampe chair that was loaned to us from Sunny Hill Health Centre in Vancouver. Plans were drafted early last spring. The part and material collection began last spring. But fine-tuning and details delayed the construction until recently - but our first trial runs have happened and Emmett is looking forward to hitting some extreme trails with this new chair. Huge thanks to everyone who helped out with this project - Paulo at AES Auto, 2nd Gen Racing, Eagle Machine, and Abby Bike Shop.

We also have to tell you that after 6 years of going out as Woody the Cowboy on Halloween, Emmett changed things up! This year he went out as a Hippo - but not an orange hippo! A grey one. An orange hippo would have looked too much like a pumpkin! And yes, we did carve another Hippo pumpkin this year. October also saw Emmett at BCCH for his 31st lumbar puncture and dose of Spinraza - this process is now a day trip to the city and just an accepted part of his life. So normal that just a couple of days later Emmett was out trick or treating! So simple - and yet so mind bogglingly complex in how it has changed Emmett's life.

Another highlight of this year is that we found out about Ean. Ean is another individual who has spinal muscular atrophy - but when he was diagnosed the name was Werdnig-Hoffman disease. Emmett has had a couple of video chats with Ean (Ean is closer in age to Emmett's parents than to Emmett) and I had the opportunity to meet him in Kelowna, BC this past spring. This incredible man and his engineer dad, Tom, have designed a device that allows Ean to complete his own suctioning. When we heard about this independent suction device we immediately went on a search to find this man. And we were on a video chat with Ean just an hour or two later. The C9000, or as Emmett and I call it, the 'Independent and Automatic C9000 that Ean and Tom Built" is incredible. But for over a decade Ean and Tom have not been able to market this incredible device. The logistics of bringing such a device to market are overwhelming for a Father and Son operation. No large company will take on the project. So it's a prototype that Ean has been using for over a decade and, as we chatted, Ean told us that they had an earlier prototype that Emmett could try out! We will have to get a video of it for you to see, but there are two switches that Emmett operates - one for each hand. The right hand switch causes the suction tubing to extend out of the C9000 until it is in the vicinity of Emmett's mouth while with the left hand switch he can turn the suction machine on and off. It is so cool and allows another step to independence. Of course, this cannot replace an attendant being close by and monitoring Emmett as a significant 'clog' requires suctioning by an individual. But it's still pretty cool.

But now - it's time for some pictures! And after the pics there are a couple of links to TV coverage of the BCCHF clinical trial 'super hub'.

This wasn't real, but on Halloween with Emmett dressed as a Hippo and Theodore as a Giraffe, it felt like they were on Safari!




Theodore is almost 2.5 years old and he loves his big brother. He loves going for walks! And he loves loud race cars.






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