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'.
Yes, that is right. Thirty. Three Zero. 30!
Does it make a difference - yes it absolutely does! Almost from the first injection when Emmett was only 6 months old and in a worldwide, blind drug trial, we have seen the difference that the drug now called Spinraza makes. Today, June 16, 2023 Emmett is receiving his 30th lumbar puncture.
Lumbar puncture #30 is probably done by the time that you read this.
Way to go, Emmett! You are one tough cookie!
By the way, Emmett helped make an Apple Cream Pie. It was his idea and it was amazing.
The guys' camping trip - and yes it was cold! Dropping eggs off the balcony to see if they could survive the drop! Pop Bottle rockets in the front yard! Launching Eggs into the sky with the Pop Bottle Rockets - in the name of science, of course! Could they survive! This is a story in picture and video.
This is the first no rain at all guys' camping trip that we've had in ages! But it was cold! Good thing we had a furnace at night time and fires when we needed them.
We had a loaner Hippocampe Chair, which is a large wheel multi-terrain manual chair. It was fun and great for long distance trails. We are going to build our own version of an off-road manual chair (the price tag on these units is astronomical!).
Even though it was a weekend and a guys' camping trip, Emmett was still doing a lot of reading! Grade 2 means a lot of work.
Theodore wasn't with us the entire time, but he joined us for lunch the day we went to Rolley Lake Provincial Park and lunch when we left! So did his Mom and Grandma!
Emmett loves everything about camping (except mosquitoes. He HATES mosquitoes!) The aroma of a campfire, BBQ steak and salmon, roasting marshmallows, even a small taste of a toasted marshmallow! All make for a great campout.
We went to the beach with the hippocampe chair on a beautiful spring day. Theo liked going for a little ride!
After the engineers proved that they could drop eggs off of the balcony in specially designed containers safely, the next experiment was to blast them into the sky with the pop bottle rocket! And they survived. In the name of science we then launched eggs without the safety of the engineered safety cells. Not only did the eggs smash - they came within a metre of hitting me on the head!
Finally, a video of some egg launches, a beach run, and a dump truck!
Emmett had one wish for his 8th birthday party - and that was to launch pop bottle rockets with his grade two classmates at his school. So we did. It was a process that may have taken longer than getting his 29th injection of Spinraza via lumbar puncture just a couple of weeks ago on the 16th of March (which went flawlessly, by the way!) Emmett and I discussed how to talk to the class about how to understand about air powered pop bottle rockets and we decided that we would take a class on Tuesday to have a discussion about air pressure, a class on Wednesday to decorated our pop bottles so they looked like rockets, and then on his actual birthday that we would launch the bottles. And Thursday was a picture perfect day - although still a bit chilly. And 22 rocket bottle launches took place with extreme excitement with each launch.
Happy Birthday, Emmett!
So that was the past few months. The 29th lumbar puncture with Spinraza, the excitement of turning eight, and in a few days a camping trip. Well, we hope there will be a camping trip. Right now the provincial park we are going to head to is closed because of snow! It will be better weather in a few days, right!