March 12, 2023
Happy 8th Birthday
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!
Yes, the faces are distorted but that is because they’re guests on our blog. This is when we’re getting ready for the launch.
We’ve already discussed safety but Emmett and I took a few moments to discuss the need for safety with air pressure – that we must respect the power of air. Emmett’s was the first rocket that we launched. This was his design.
Each rocket that Emmett has built has been different. This one had large stabilizing wings and a ‘doughnut’ on top to hold parachute man in place. We don’t have a picture of parachute man floating down on his parachute, but it did work. We’ve never launched a plastic person into the air before!
Yes, the launch is pretty spectacular!
You can see the air hose snaking across the ground. That the children are a safe distance away. That we’re launching into an open field. The wind did carry a few rockets so that they landed close to us – but a plastic pop bottle isn’t going to hurt if it drops onto someone!
In addition to his school birthday fun, Emmett and his family (that were close by) went to Fort Langly, a local historical site, and spent an afternoon exploring and seeing what a fort built in the 1800’s would be like. We even got to use a steel and flint!
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!
April 1, 2023
So Many Things!
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!
June 16, 2023
Thirty Lumbar Punctures!
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.
Emmett loves school and is in the last couple of weeks of Grade Two. He is looking forward to Grade Three in the fall.
Emmett has participated in Hippotherapy for the past two years. His current horse, Pepsi, loves the carrots that Emmett feeds her.
Challenger Baseball joins Emmett with a teammate. They have a lot of fun out on the baseball field.
Power Wheelchair Soccer with Sportability is a sport that Emmett really enjoys.
Heading out fishing on the open water in the canoe is so much fun … actually Emmett doesn’t really enjoy it a whole bunch! LOL
His school had a fun fair with all kinds of activities and displays – including snakes!
It was light rain on the day that we selected to pick Emmett up from school with the bike and weehoo trailer.
And Emmett still loves going camping. We were out at the end of May before wildfires and dry conditions caused campfire bans. Emmett and Theo had a great weekend camping with their parents and all four grandparents. We were very lucky because the mosquitoes were not bad at all (did you know that in the world mosquitoes cause more human deaths than any other animal or insect! No wonder Emmett really, intensely dislikes them.)
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.
November 20, 2023
**Sorry but here’s another post where we have lost the pics in the rebuilding process**
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.
The second thing is that Emmett and his parents were part of BCCHF’s ‘Small is Mighty’ 2023 campaign. An astounding $4.2M was raised for the Clinical Trials Super Hub!
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.
BC Children’s Hospital Foundation raised 4.2 million dollars at their recent Ball, allowing them to launch a clinical trial ‘super hub’. 8 years ago Emmett was 1 of 124 infants from around the world that participated in an experimental trial. The trial included BC Children’s Hospital as one of only 2 or 3 Canadian hospitals that participated in this his specific trial; and the day he was diagnosed with SMA Type 1 was the same day that he was enrolled in this blind drug trial. It has changed his life.
Meanwhile, Emmett is closing in on his $4,000 fundraising goal for Canuck Place! Thank you to our many supporters! Emmett was hard at work on his special project today. Two individuals who have made a donation to Canuck Place Children’s Hospice via the Orange Hippos will be gifted one of Emmett’s Special projects. It was a lot of work but we had fun also! The Orange Hippos have now raised $3,425.00 **Strike That as it’s now $4425** towards his $4,000.00 goal. This fundraiser ends on December 5th.
What you don’t know is that Emmett has been fighting a cold for two weeks. It has made him miserable and he’s missed a lot of school. While a cold has sent him to the ICU in the past, his lungs are clear and he’s fighting it at home. Any size donation is welcome to help reach his target and for you to support a very worthy organization. Visit my.canuckplace.org/orangehippos
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’.
Theodore is almost 2.5 years old and he loves his big brother. He loves going for walks! And he loves loud race cars.
https://bc.ctvnews.ca/they-save-lives-more-clinical-trials-coming-to-b-c-at-new-super-hub-1.6655152
https://vancouversun.com/news/local-news/abbotsford-family-clinical-trial-saved-his-life
December 4, 2023
All Terrain Chair
Every youngster loves to explore and Emmett is no exception. The challenge is that there are some places that simply are not accessible. We have gone down paths with his powerchair that literally shook him and his chair to pieces. We have the incredible “We Carry Kevan” backpack – that we refer to as the “We Carry Emmett” backpack and it opens an entire new world of exploration. However, it also requires a relatively strong and fit carrier or, honestly, more than one. The “We Carry Kevan” backpack will be an ongoing part of our equipment for Emmett, however, he is a big boy and carrying him on your back is quite a weight so we began to explore other options. Over the years we have seen extremely expensive tracked wheelchairs that start at about $20,000 Canadian or the 6×6 wheelchair at an unspecified price – they are simply out of our league. Not to mention how easy would they be to transport and, more importantly, would they offer the head and neck support that Emmett requires.
Then there’s manual chairs – there’s the Hippocampe Chair (there isn’t a specific website but a search will provide many 3rd party sales opportunities) which we borrowed for two weeks this past spring from Sunny Hill Health Centre in Vancouver, a great local resource and support for children with physical challenges – and who have a range of loaner equipment! The Hippocampe Chair starts at about $5,500 Canadian and would be more like $7,000+ when set up properly for Emmett. The Extreme Motus is another chair which offers off-road capabilities with someone pushing from behind. We first found this Extreme Motus chair in a for sale ad on Vancouver Island (but it was a very large size that Emmett wouldn’t fit) and a significant price. New this chair is close to $6,000 Canadian. And none of these prices include taxes/shipping/duty/etc. They were simply out of reach.
So just like several other items you will find on the Resources Page, we decided to design and build our own. This was not as easy as some of our other projects and from the initial idea to the finished, not that any project is ever really finished, product it was probably 10 months and it involved a lot of hands. But both Emmett and his little brother, Theodore, love it! Now the first thing I should share is a problem. You cannot go everywhere with this all-terrain chair. There are some paths that are too narrow. There are some trails that have barriers to limit the trail to pedestrian traffic and, unless the all-terrain chair can be lifted over these barriers, this literally stops most wheelchair users from accessing them; a lot of strollers too! The good thing about this all-terrain chair is that it handles curbs with no issue, going down stairs is actually pretty simple (up requires more muscles), gravel/sand/mud/not-too-deep water a breeze. Check out the video at the bottom of this page to view Emmett and family tackling a fun hike that is impassible with a normal wheelchair!
So once we decided to build our own, we drew up some plans. From there we went to PAD designs. You may have heard of CAD designs and I don’t have the skill for that (well, I have used CAD a few times when it’s been Cardboard Assisted Design), but I’ve used PAD designs multiple times. This stands for Plywood Assisted Designs. That’s right, the frame was first built out of plywood to provide an idea of how it would look and work. We also started gathering parts. The low pressure all-terrain wheels – this was probably the biggest expense of this build. We went to a local metal supplier for the aluminum pieces for the frame, rod for the axles, tubing for the handle bars. (Initially I had thought of using a bicylce handlebar set but we ended up building them from scratch.) The aluminum race seat and 6-point race harness. Mountain bike brake calipers, rotors, levers, and cables from a local bike shop added to the cost. Then coming up with a plan as to how to attach the brake rotors to the rear wheels. This involved working with a local machine shop to create some of the custom pieces that would have been too challenging to create in a home garage. Then taking all of the pieces to my friend Paulo, who is an amazing guy plus an awesome fabricator, who has known Emmett since he was less than six months old. Paulo was onboard from the initial idea and truly brought this project to completion. Gaps in my plans were filled in by Paulo. I posted on FaceBook that I was looking for a race seat and expired safety belts and my friend Burton, at 2nd Gen Racing, let me know that he had a small Kirkey aluminum race seat plus expired belts that he would provide for the project. If you’re wondering about aluminum, apart from the fact that it is light and strong, stay tuned next spring as we will not only be taking Emmett onto the beach with this chair but we will be going right into the water! Without having to worry about it rusting!
Theodore loves the All-Terrain Chair and he’s had a few rides in it and has claimed it as his own; but he does seem to understand that it really is Emmetts. I’ve squeezed into it but don’t really fit but Emmett’s mom is quite comfortable going for a ride in it. Of course, she and Emmett apparently also share some of the same clothes! Functionally the chair is finished but there are still some extras that we’d like to add. We need to have a framework/carrier to hold Emmett’s suction machine. Possibly a hook or attachment to mount the food pump. And for the pusher a cup holder would be a nice touch. And while us old people are hoping that there is no snow, Emmett would love to try the All-Terrain Chair out in some deep snow. Me, not so much. I want to take it out into a lake and see if it floats!
December 6, 2023
Emmett was at Canuck Place Children’s Hospice in Abbotsford last night when they Lit Up The House. He was able to get a pic with Santa recognizing the Orange Hippos’ fundraiser which, as of last night, brought in $4675.00 for Canuck Place. Thank you to everyone who supported the Orange Hippos! Later today Emmett will select the donors who will be gifted a special project. If you missed it, there’s always time to make a donation to this worthy cause at my.canuckplace.org/orangehippos
Emmett is pleased to announce that he is gifting the two special projects to special people who have made donations to Canuck Place Children’s Hospice through the Orange Hippos. The first goes to Christine and the second goes to Amy and Isaiah! We will try to get these to you within the next week. Thanks for your support!
Merry Christmas and a Happy New Year!
