Since August is Spinal Muscular Awareness Month, what better way to bring awareness that a little boy having fun going down hills and winning races. So here is the video "Wheeee!" in which Emmett is out and about in his awesome burnt orange wheelchair. You will want to have the sound on!
Did you think you would see a tube fed little boy enjoying an ice cream cone! Look again, because that is absolutely what is happening. A couple of weeks ago Emmett said what we know many kids say to their parents. "Let's go to McDonalds!"
Now, apart from the fact that it is a pandemic so the Willms' family rarely go out to restaurants - and during a pandemic even take out is a rare treat. Apart from the fact that they rarely go to McDonalds - it's probably been a year since they were there last. Apart from the fact that he cannot eat a hamburger or fries or that his mom and dad will never let him play in the unsanitized playroom - even if there wasn't a pandemic. Emmett knows about McDonalds and he wanted to go. He loves ice cream!
This picture says it all! Emmett is sitting up in his car seat, holding onto his ice cream cone, and eating it. Yes, he is eating it and he can swallow it too. He loves ice cream (strawberry ice cream is the best!). **In case you're wondering, Emmett takes a few licks and then he is full! **
Five years ago today Emmett was diagnosed with Spinal Muscular Atrophy Type 1. This disease removes the ability of the brain to communicate with muscles. And not just large and fine motor muscles - but the ability to swallow and even breathe. It is a devastating disease. In the fall of 2015 Emmett started on an experimental drug. This drug called Spinraza is injected by lumbar puncture into his spinal column every four months. The result is the little boy that you see holding up his own head, holding onto his own ice cream cone, and licking and enjoying his own ice cream cone.
Then there was the morning when I was at their house running an errand. Emmett was doing his leg exercises and shouted, "Grandpa, look at me!" so of course, I did. Even though I already was. And I saw him doing his exercises which was fantastic. But he had to tell me that he had his AFO's on. I didn't notice that. Emmett doing a workout with his AFO's on is like you or I going for a walk with 10 kg weights on our ankles. This little boy is so strong! Who knows what is next.
We are so proud of Emmett. We are so in awe of this little boy. He fills our hearts to overflowing!
Emmett didn't get his fifth birthday cake from Grandma Rhonda last March - but she's outdone herself with the best hippo cake the world has ever seen! Emmett loved it!
This blog post was inspired by Emmett and also by the book Zoom - written by Robert Munsch and illustrated by Michael Martchenko.
I am so happy with my new power chair. It is awesome and very fast and the best thing of all is that it is orange.
Thank you to everyone on Emmett's medical team who helped make this happen. Thanks to the BC Government for funding the chair, and for the support from the Shriners in funding important extras required to make the chair more functional.
August is SMA awareness month. Emmett was diagnosed with Spinal Muscular Atrophy, Type 1 in August 2015. This disease is the #1 genetic cause of death of infants. By the fall of 2015, Emmett could not be upright for any length of time as he would choke on his own saliva (this is why he still has a suction machine that is always within reach). That fall Emmett also started receiving the drug Spinraza, which has opened new pathways for messages to get to his muscles. You can see the progression throughout these photos. Thank you for following our blog and learning more about Spinal Muscular Atrophy. Learn more at Cure SMA Canada and Cure SMA.
July 9th Update: Emmett is back home. The procedure went well. It is a tough day with a lot of anxious moments - because Emmett knows everything there is to know about lumbar punctures. This was his 18th lumbar puncture - they'll be happening every four months for life, unless a new method or a new drug is discovered. Emmett wants you to know that he does like going to sleep when this happens.
Every four months Emmett receives a lumbar puncture where a tiny amount of spinal fluid is removed and a tiny amount of Spinraza is injected. This is the drug that has reinvigorated the pathways in his spinal column so that his brain can talk to his muscles. So that messages like, "Hey, swallow now!" and "Emmett, hold your head up!" or "Reach out and turn the page of that book!" get through. And Emmett does it. It is a miracle drug - a miracle that requires a huge amount of work. Recently on Canadian news there have been reports about kids' parents seeking funding for a gene therapy treatment. A one time treatment - but it is only for children under the age of two and only in Canada under unique circumstances. Health Canada hasn't approved it yet. Obviously, not something that is available to Emmett. We are, however, so thankful for the drug that is available. The healthcare system that is helping him. And Spinraza is an amazing miracle drug that is absolutely working for Emmett.
So this week, Wednesday July 8th, Emmett will be getting a lumbar puncture and for the first time Emmett will be anethesized prior to the procedure starting. Yes, that does mean that he has been awake and alert for every other lumbar puncture, however, for the last one he was anethesized part way through. You can appreciate that Emmett is quite looking forward to "falling asleep in the middle of the day!". This is something that this five year old simply doesn't do any more.
Four months is not a long time, but four months ago when Emmett had his last lumbar puncture the world was a different place. There was a virus overseas but nobody on this side of the ocean was really in a panic, it was just a concerning situation. Emmett was Abbotsford's Police Chief for a day. Then in the intervening time everyone was suddenly welcomed into a version of Emmett's world. Sanitize! Wash your hands! Social Distancing! Don't go to the grocery store! Stay away from anyone who has a cough! On and on it goes - a new daily plan for everyone. Schools closed. Work places closed. Everyone's life became a closer version of what Emmett has been living since he was six months old. There have been changes for Emmett too. Tough changes.
His family bubble was instantly closed up. Family members who were still working were not able to be inside his social bubble. The rare visits meant being on opposite sides of the yard. Video conferencing became the main stay of story time and more. Physiotherapy via video conferences? Yup. Speech Therapy - hmm, curiously Emmett doesn't hear from them much. Occupational therapy - absolutely. In fact, there have been days when Emmett has been booked for 2 and 3 video conferencing meetings. So incredible. Pam and I have stayed in that family bubble - we're not working outside of the home. We're not going into grocery stores. We are extreme social distancers - if that is even a word.
Yet it is the start of summer, so when BC opened their provincial park system we logged in and booked a campsite for the five of us. Emmett had already agreed that he was ready for something new. Alice Lake has been a spring go-to place. It has cell phone service. Electricity. And the road ways are paved. It is ideal for camping and it was not even an hour away from BC Children's Hospital. Emmett and his family have camped at Rolley Lake and loved it. We've done day trips to Golden Ears. But this year was going to be a stretch - we booked a few nights at Sasquatch Provincial Park. It is about 10 minutes drive outside of cell access. There is no electricity (don't worry, our RV has been fitted with a small inverter that can power all of Emmett's medical equipment). And it is the furthest that Emmett has been from BC Children's since he was five months old. Emmett and Grandpa were up for it; everyone else was optimistic with a large side of anxiety.
We choose provincial parks for two reasons. First off is that they are large and spacious sites with plenty of room for Emmett and us to roam without bumping into someone at a neighbouring campsite. Second, with a medical note children and their parents get the base campsite rental free. This is a huge bonus for a family that is always challenged by the expenses that sometimes never end as you accommodate someone with medical requirements. The large sites also typically mean that there is a lot of trees, birds, and nature trails to explore. You can believe that the power chair batteries were fully charged and that the WeCarryKevan backpack was ready to go.
Emmett was so excited - just seeing the RV arrive in his driveway brought on a fantastic response. The morning that we we heading out, Emmett played on his own all morning while his mom and dad packed. Emmett is a great little boy but it is very rare that he will spend that amount of time without insisting that someone play with him. Once at Sasquatch Provincial Park Emmett wanted to do it all. He wanted a campfire. S'mores. Roasted marshmallows. Hot Dogs. Swimming time. Fishing. Playing at the beach. Going for a hike. And he did it all and then some.
This camping trip was fantastic. And it will give Emmett great memories to dwell on while he is undergoing procedures that he doesn't enjoy at the hospital. We do have to say that the hospital is still one of Emmett's favourite places. There are so many people who know him there. His friends. There's staying overnight at Canuck Place - another fabulous group of people who go out of their way to support and assist Emmett and his parents. Thank you for supporting Emmett. You can send him a message on FaceBook through his parents - or his grandparents. This lumbar puncture is a tough go - but Emmett is even tougher! Literally, the strongest and toughest boy we know.
And now for some photos:
Deer Lake is one of the lakes in Sasquatch Provincial Park. It's a beautiful park. However, Emmett found a pothole with his powerchair and he got stuck! Fortunately, we didn't need to call in a tow truck.
The WeCarryKevan backpack was certainly put to use - and not just for wide trails. This backpack is made for going deep into the forest (so far that means within metres of the main trail!) which is so much fun for Emmett.
We found Eeyore's House! It is always exciting when we find Eeyore's house. Emmett loves his Winnie the Pooh stuffies - and when Emmett is on a hike he is always keeping his eyes open for Eeyore's house. After a hike there is nothing as relaxing as lounging near a campfire.
While fishing during a canoe ride, Emmett caught his first fish. And after fishing it was refreshing to go for a swim in Hicks Lake - only Josh and Emmett were brave enough for that!
Campfires are so much fun - but finding rocks is even better!
Returning home involved getting cleaned up (we had good weather but there was one rainy day) and then having a swim in the backyard pool. Lots of fun stuff so far this summer. After this next injection of power juice is completed, we're sure that Emmett has plans. Because he always has plans!