February 28, 2025
Today is Rare Disease Day 
Emmett has Spinal Muscular Atrophy, Type 1. Thank’s to incredible medical treatments, which were not available when he was born and later diagnosed, he now presents as SMA, Type 2. This is a rare disease.
Did you know that 70% of rare diseases begin in childhood and that all pediatric cancers are considered rare?
At Canuck Place, we provide specialized care, symptom management, and emotional support for children living with serious illnesses—including rare diseases—and their families. These children face unique challenges, but they also inspire us every day with their strength, resilience, and joy.
Today, we stand with them, raising awareness, and amplifying their voices to advocate for the care and support they deserve. Share this post, learn more, and help make a difference!
March 9, 2025
Double Digits – 10 Years Old
Today Emmett is 10 years old!!! He is kind, thoughtful, and curious. He loves books, lego, Star Wars, the Canucks, and going on adventures. Emmett joins every club in school that he possibly can!
Reaching this milestone birthday hasn’t always been guaranteed for us, so today we are even more thankful for every single moment together. We love you, Emmett
April 10, 2024
Astronomy Project – in rainy BC?
During March break, Emmett had a school assignment to observe the moon. The challenge being that springtime in BC is typically cloudy, rainy, impossible to see the moon weather! And that is exactly what happened so Emmett had to do his moon project without actually seeing the physical moon. Last night he was able to change that, and while it was too late for the school assignment, we had fun looking at the moon. It’s the almost full moon in its glory!
April 17, 2025
April 17, 2025 Spinal Fusion Surgery
Emmett is currently in the operating room at BC Children’s Hospital (it is currently 8:40 a.m. PST) and there will be no updates on the surgery until the end – that means no news until 6:30 p.m. PST. Alisha and Josh are at BCCH and obviously waiting … impatiently waiting. Alisha and Josh will appreciate your support via prayer, facebook messages, emails – it will be welcomed. But please, do not expect a response. They simply may not be able to do that.
Emmett’s aunt, Alesha, has set up a Meal Train that you can find at https://mealtrain.com/96mk2o .
Emmett will be at BCCH for at least a week and more likely 10 or more days. The recuperation period will be lengthy. You can imagine that a 10 plus hour surgery is going to require a lengthy recuperation. The advantage of this surgery to place these rods in his back is that it will straighten the curve in his spine (scoliosis) that will give his internal organs the space that they require.
Update: Surgery is over
Shortly after 5 p.m. (PST) Emmett was out of the operating room and into the ICU recovery area. Alisha and Josh have not yet seen Emmett. They have not spoken with the surgeon.
It’s now 7:05 p.m. and Alisha and Josh haven’t seen Emmett yet, but they have spoken with the surgeons. The surgeons described Emmett as a “Rock Star”! The operation was expected to go until 6:30 to 7 p.m. PST, so they are very happy. As mentioned, Emmett was out of surgery just after 5 p.m. PST.
We will post more tomorrow, but this will be our last post today. As you can appreciate, Alisha and Josh are completely drained. There are no words to describe Emmett, as amazing as he was during the surgery that was only the start. Emmett now faces a long and challenging recovery time. If mom and dad aren’t in with Emmett yet they will be soon
April 18, 2025 Update
Emmett had a good night, considering. Just a brief update – Emmett slept well. The drugs he’s getting are doing a great job. Last night he was very alert while in the ICU recovery – to the surprise of his nurses. And right now he prefers sleeping on his tummy.
You may be wondering why we use and encourage you to use emmetts-journey.com? That is because FaceBook doesn’t keep things in sequence – which can lead to miscommunication. If someone ‘likes’ or comments on an earlier post it can make that jump to the front of the queue; even if it is older information. If you’re sharing information about this awesome young man, please share the link to emmetts-journey.com so that we can ensure that the information is accurate.
And don’t worry, there will be a much larger post later when Alisha and Josh are ready.
April 19, 2025
Saturday, April 19, 2025
We FaceTimed with Emmett for a few moments this morning before he had to leave for something more pressing – the movie he was watching. Emmett is doing well. The staff had him sitting up in bed this morning. This surgery has been tough but he is tougher! His doctors and nurses are pleased! Alisha and Josh are alternating nights with him, supporting him 24/7. As great as the staff at BC Children’s Hospital are, Emmett needs his mom and dad.
And the Disney Channel is amazing! Probably not what you think when Disney is mentioned – he’s into Star Wars and the Marvel Universe.
Alisha and Josh want to thank everyone for the support, care, and generosity provided. We’re not going to name names, but books and Lego for Emmett, gift cards to get meals as they are in Vancouver (while spending huge amounts of time at BCCH their home away from home is – quite fittingly this weekend – the Easter Seals House. It is lovely and so close to the hospital), and even a thorough cleaning of their home. It will be spotless when they come back. Most of all, your support. The way you let them know that you are praying for them, thinking about Emmett, and uplifting their spirits! Messages via FaceBook directly to them or indirectly through a family member are so appreciated; but please don’t expect a response. Thank you!
In addition to using this website to give updates on Emmett, it’s also a bit of a teaching tool. Over the years we’ve talked a lot about Spinal Muscular Atrophy, Type 1. The amazing drugs that he has been privileged to access (first Spinraza/Nusinersin by lumbar puncture and now Evrysdi/Risdiplam by his G-Tube) have been life changing. This means that he is more physically active and upright than individuals with SMA Type 1 from two decades ago. It shouldn’t surprise you that Emmett is in his school’s chess club but you might be surprised that he’s also on his school’s cross country team! That he’s on a Challenger Baseball team and that he has been playing power chair soccer for years. It isn’t a surprise to his wheelchair mechanics who have to fix his very worn out chair quite frequently. Emmett has Scoliosis – a curvature of the spine. This curvature has been closely monitored for years and this Spinal Fusion Surgery has been anticipated for a long time. Straightening his spine that means that his internal organs now have more room. His lungs will have more room and he’ll be able to breathe more freely. Again, for those who’ve followed Emmett’s Journey, you know that SMA has a significant impact upon Emmett’s lungs. This surgery will enhance his life. If you’re brave enough, you can read more about spinal fusion here.
April 20, 2025
Easter Sunday
Saturday was a momentous day. With the ICU team’s help, Emmett sat up in bed for a while. Then he was moved from ICU to the Spinal Team’s floor, obviously a good sign. There the team positioned him in a sling, lifted him up, and set him down in apparently what is the biggest and most comfy chair in the world. Emmett acceptance of this seated position in this big, comfy chair was his sign that this was indeed a comfy, big chair. Emmett has slept very well the last two nights. And he’s finished one Star Wars TV series and started another! This boy has never had this much TV time!
Science at BCCH
April 21, 2025
I had a chance to visit with Emmett, Alisha, and Josh today. Emmett was in great spirits and it was so good to see him. He even stopped watching Star Wars to indulge me as we made Hippo Toothpaste. If you don’t know that Emmett loves Hippos, well, that’s another story! But we did and it was fun and we didn’t make a mess of the hospital room. Even better, I wasn’t banned from coming back!
Emmett was sitting in the big, comfy chair for over 20 minutes. His mom and I had egg salad sandwiches for lunch. And I got to meet some of his medical team as they were in and about. Plus, today Emmett started a long standing tradition of having a survey question a day on his hospital room’s white board. Today’s question was “Do you like Star Wars?” and the yes side was ahead when I left. The no column was empty BUT there were 2 people in the “I’ve never seen it” column. Fortunately, they were fans of Toy Story so redeemed themselves. I think Emmett is planning to have a room party with a large screen TV so they can watch the very first Star Wars’ movie.
Emmett and I also came up with a few more questions that he can survey his staff in the upcoming days! They included ‘Do you like camping’ and ‘What is your longest scar?’.
April 22, 2025
Emmett’s little brother, Theodore, really misses his big brother and his mom and dad too. Even though he got to play in the stream and hang out with Marjorie the Kitten at Grandma Rhonda and Grandpa Roger’s house; and play trains and cars at Grandma Pam and Grandpa Frank’s house – it just isn’t the same.
Theo loves to take over Emmett’s wheelchair and race around the house. He loves to speed around the neighbourhood on his balance bike – and he’s starting to like his pedal bike. But it has now been a week that he’s been with grandparents and that just isn’t the same as being with his mom and dad and brother.
There are always lots of video chats and Theo heard that Tuesday was the day that Emmett sat in the big, comfy chair twice. Emmett had another really positive day. And on Wednesday Emmett’s orange power chair is going to get a completely revised seat that will be designed for his brand new posture! And on Thursday a power chair mechanic is coming in to fix the very badly broken suspension. Today was not so much a health update but a life update. Stay tuned for more!
April 23, 2025
Amazing Progress
Emmett and Theodore celebrated Easter a week before Easter actually happened. Alisha and Josh knew things were going to be crazy. Then things just seemed to stop … for both of them. But we’re excited today also. We’ve described this spinal fusion surgery as major and it absolutely was. Nine and a half hours of surgery is major. If you do a search on painful surgeries you will find that spinal fusion is near the top of the list. And that is for connecting just two or so vertebrae in the spine. Emmett’s fusion was most of his back along with the placement of metal rods. There is just no way to downplay this. It was absolutely “H E double hockey sticks”!
Yet a week into recovery now and Emmett is bouncing back. Of course there is a long way to go but when Emmett rolled his eyes at one of my comments, I knew that a positive turning point had been reached. When he allows his mom to give him a hug every time she asks, you know that he’s feeling better (and that the pain killers are inhibiting his inhibitions, because this tween doesn’t usually like getting hugs!). When he’s joking with his dad, there’s a sense of normal returning to his world. The first 5 days he literally didn’t want to be touched. Or talk to anyone.
There is no question about it, his spine is so much straighter than before the operation. He’s been sitting in the big, comfy chair twice a day (grandpas are not allowed to sit in it!) and today he was also sitting in his redesigned power chair seat. It had to be redesigned because the supports he used to require to hold him up straight, to reduce the progression of scoliosis, are no longer needed. Emmett literally couldn’t sit in his seat that he’s used for the last several years. His back is now completely different and so is the power chair seat! The question is, when will Emmett get to take his power chair outside to enjoy the spring weather! Soon, we think. Scoliosis zero; Emmett 10!
April 24, 2025 – Coming Home this Weekend!
Yes, you read that correctly. Emmett continues to impress the hospital staff and he will be discharged this weekend. His pain management is well under control. His movement is really good. And he is sitting up for over an hour at a time. Friday the goal is two hours at at time. Today was an incredible day because Theodore got to go to visit his big brother and his mom and dad. It has been a long time since he has seen them and everyone was very happy to be back together again.
April 26, 2025
Coming Home Today
This is so awesome. Emmett is coming home today and everyone is excited about that. And sorry that we didn’t have an update yesterday. Emmett got to hang out with his cousin, Greyson, and his Uncle Ben and Aunt Alesha.
The question of the day is “Have you ever had surgery?” and while it isn’t part of the question, the next should be how many staples did you get? Emmett has more than Theo can count using all of this fingers and toes!
Emmett is very thankful for how everyone has been supporting him. That is so awesome. Everything from the MealTrain that his Aunt Alesha set up for his mom and dad to things specifically for Emmett – like the Barnes&Noble gift certificate that allowed him to complete his set of RedWall books! . Emmett got to hang out with his cousin, Greyson, and his Uncle Ben and Aunt Alesha.
The wrinkles continue – the technician who came in to fix Emmett’s 4.5 year old power chair has condemned it! Written it off! The cost of repairing it is too high! Emmett literally ran it into the ground. Fortunately, they’ve provided a very rare loaner chair which is greatly appreciated. Emmett has to ride in his chair in the van, so without his chair or a chair he would have been stranded in Vancouver. While the process for replacing his chair was underway it was not anticipated to take place for another 6 months. We’re hoping that this can be fast tracked!
April 27, 2025
So Tall!
Emmett is enjoying being back at home and Theodore loves having his family back with him! Emmett now sits so tall in his power chair that it is incredible to see him! He is literally centimetres taller than he was two weeks ago. (It sounds so much better to say that he is inches taller but that also really dates me!). Emmett also got home in time to enjoy the spring blossoms but, as you can see, it’s literally snowing blossom petals in their front yard.
Alisha and Josh are so very pleased with how this young man is doing – but it isn’t all blossoms and petals (I cannot say roses as they aren’t blooming yet.). Emmett is not sleeping well so that is the next obstacle to overcome. Another challenge is that none of the adaptive seating or positioning equipment that they have is suitable for Emmett to use. Fortunately, tomorrow (Monday the 28th) that will be worked on so that Emmett has more options.
Meanwhile, lounging on their balcony and cocooned with pillows is a comfortble option.
May 10, 2025
Every day is better than the day before. First up, any 10 year old would want you to know that he is not in school. But they bring school to him and he is working diligently.
Second, the improvement is ongoing. Emmett’s posture since the spinal fusion surgery is incredibly upright. His breathing is easier because his lungs have so much more room. Unexpectedly, he’s able to reach things more easily.
Last Thursday they removed the staples from the incision on his back. The number got lost but it was something like 55 to 75 or 80 staples! This incision is about 35 centimetres long. While getting the staples removed at BCCH the word was that everything looks good as he’s recuperating from this major surgery. Fantastic news. We’re also pleased to report that he is sleeping better. His activity level is much reduced compared to pre-surgery and that is to be expected. There is still much healing that has to take place but Emmett has come so far already! As he has missed the spring guy’s camping trip, he’s making plans now for the fall excursion.
I think that there will be more pictures tomorrow!
May 12, 2025
Mother’s Day (well, the day after!)
Well, this actually happened on Mother’s Day the 11th, but I’m only getting around to posting them today. One of the things that Emmett is working on right now is to build up his endurance for sitting. Obviously this photo is at his school’s playground, yet Emmett isn’t ready for school. He cannot stay sitting more than two hours. So it is home school support. One advantage is that if Emmett really likes a subject, then he can spend a lot more time working on it. Emmett is also not ready to try out the swing that he loves – so his little brother Theodore got to use it.
In the photos below from left to right, Emmett enjoying his favourite subject/hobby/pastime – reading. I don’t remember the title of this book – but if you’re thinking that this novel looks huge for a 10 year old kid, allow me to say that many adults would be scared off from just the size of it. Then Emmett and Theodore sharing Mother’s Day cards with Grandma. Emmett thinking about the time that his grandpa took him down the twirly slide and they got stuck and he got some bruises – and all of us got shivers down our spines and absolutely did not even consider going down it again. Except for Theo – you might see the top of his head as he flies down it. Emmett’s loaner chair doesn’t tilt, but after some work on his very old and rebuilt many times chair that he uses for power chair soccer, we got the tilt feature working again on this setup. While sitting upright is obviously a goal that Emmett challenges himself with every day, he can stay mobile longer if he is tilted. Thumbs up for comfort! And the final picture is of Emmett supporting Theo while Theo is shouting, “Higher! Higher! Grandpa, push me HIGHER!”
It will be a few more weeks before Emmett is comfortable to be physically lifted into the swing or the ATC (short form for the All-Terrain Chair!). And maybe any cardboard box boat adventures will have to wait until next year!
May 16, 2025
BCCHF Shine Magazine
BC Children’s Hospital Foundation sends out a magazine to individuals who support their foundation. For obvious reasons, Pam and I are regular donors to this worthy cause. Pam read it first and exclaimed, “Did you read this!”. I hadn’t. And there it was. An article on page 6 that Alisha and Josh hadn’t told us about!
To see the entire Shine Magazine, click on Shine.
June 1, 2025
Soccer … Emmett is cheering from the stands!
Theodore has just started playing soccer and this week got his soccer uniform. Emmett has had to stop his soccer experience while he recuperates from his back surgery, so he will be Theo’s cheerleading team this season. The big news is he decided that it was time to be back at school. He loves it! These two boys are so awesome!
When Emmett is ready to play power chair soccer again, he’ll have to find a new program. The organization that has been hosting power chair soccer since 2022 (maybe 2021) has seen the participant numbers dwindle thus is closing down after next weekend. Unfortunately, Emmett’s schedule is too busy to accommodate this event, plus the risk of two power chairs making contact is simply not something that anyone wants to see this early in Emmett’s back surgery recovery timeline.
June 26, 2025
Last Day of School – Moving on to Grade 5!
June 27, 2025
The WSG! Also known as the Water Squirt Gun.
We initially built this Water Squirt Gun for a school activity, which was cancelled before we could use it; but the idea is obviously so great that we have finished it off! The WSG or water squirt gun is an incredible water cooling device that will absolutely get a lot of use this summer.
What you need is:
1. An automotive windshield washer reservoir complete with pump (find one at an auto recycler/wrecker. I paid $21.40 for mine). This one has a very long neck but many do not. I not only thought that this was cool looking, but it was only 1 minute to remove from the very torn apart vehicle vs. 10 plus minutes.
2. A small 12 volt 4.5 aH battery ($40 Canadian tire/Lordco). We had one on hand so it was easy. I use a trickle charger to charge it up!
3. Adaptive Switch for those with limited hand/arm strength ( a set of 3 is $110 so these put the $$ up. https://enablingdevices.com/product/compact-switches/ but you can get cheaper at https://www.etsy.com/ca/
If arm strength isn’t an issue then you can get a toggle switch for under $5 almost anywhere.
4. An inline 12v fuse is also a good idea (after all, we’re playing with water & electricity – even if it is low voltage)
5. Lots of zip ties. Some small diameter plastic or rubber hose.
6. You can just zip tie the hose to the chair frame and spray or you can get fancier. I used a small piece of abs plastic that we will mount to the chair arm. Then I inserted to windshield sprayer nozzles into that.
Then you’ll need rudimentary electrical circuit skills to wire this up. You will need plastic bags if your child is using a power wheelchair – to protect the electronics. Zip tie everything to the chair and then start spraying water.
Prepare to get wet!