Hurray! No More Stroller!
Emmett just had a lumbar puncture and an injection of Spinraza - also known as Nusinersen - on Wednesday, July 11th. This means a very full morning at BCCH and part of the afternoon. Since Emmett started receiving this drug almost three years ago (he was involved in the blind scientific study to test this drug) the required time at the hospital has been greatly reduced. This is good but it also means that many activities are compressed into the morning.
Hanging out with Emmett at BCCH is sort of like being Cliff from Cheers while he is hanging out with Norm at Cheers (too young to understand - check out Google). Literally from the moment we parked in a parking spot staff on their way to work spotted him and called out to chat with Emmett. We didn't walk down one hospital corridor without someone exclaiming "Emmett!" and engaging in an enjoyable conversation with Emmett and Alisha. All of them were wonderful conversations but the best was a nurse who had cared for him while he was battling RSV. She was amazed to see this little boy sitting in his stroller (mini-manual wheelchair), talking, and not only alert but also very intelligent (hmmm, bit of grandparent bias possibly there!).
The challenge of this intelligence is that Emmett could tell that these events and tests were leading up to a procedure. The blood work first thing in the morning was very uncomfortable and never something that any little one enjoys. Emmett milked that for all it was worth - showing everyone that he was chatting with the two bandaids (ouch, yes, it took two tries to find one of his tiny veins). Off to physio where he underwent an assessment. This is a tough one for a grandparent to watch, because the assessment is part of the study so only specific devices can be used to encourage him. Well, they aren't the right ones so Emmett certainly doesn't show off his best moves. Which means that I'm trying to bite my tongue and not say but Emmett can do so much more! Or the more tough one, "What kind of a ridiculous test is that for a kid with Spinal Muscular Atrophy!" - but I didn't say it (too loudly or in front of too many people!).
There's a FaceBook post about four kids, Emmett being one of them, in Charlie and Florence's 10K to End SMA in which these four kids are being recognized and also described as warriors. That is so absolutely true. Warriors in the fight against SMA. During the initial study our family wasn't allowed to be present during the Lumbar Puncture. Now we are and while we want to be there for Emmett - there's a part of us that really doesn't want to be there. You can understand that, I'm sure. He knew it was coming. He asked that it didn't happen but knew that it would. He cried and fussed and wiggled and twisted. And as much as this hurt to see it was also amazing. You see, his voice is now so much louder than it used to be. He can wiggle and twist! HE CAN WIGGLE AND TWIST! Oh my goodness, this big little boy can move. With the next procedure in four months he will be getting additional sedation - it's too hard to do a lumbar puncture when the little boy who is getting this procedure is trying to dance about the bed. A Painful procedure, no doubt, but this little warrior was up and about and happy (relatively) and ready to chat in less than 30 minutes. He thanked the doctors and nurses and procedure coordinators as he left. And stopped with his mommy and chatted with the family of a very tiny little one who was going in for his first spinraza shot. That little guy has got a long and tough road ahead - but he's getting the best care available. Even though the drug is still not easily accessible in Canada (there are so many funding questions and roadblocks) the pharmaceutical company is working with hospitals and families to make it available. Especially for children who are diagnosed with SMA Type One. After that chat, Emmett got loaded into the van where he could finish watching Cars (this was a hardship for Emmett that he watched only under significant protest. And only because his grandpa forced him to watch it!) and then watched his favourite Toy Story 2 with Woody the Cowboy and Buzz (and Buzz 2). We have lost count on how many times Emmett has been to Vancouver - and he's watched Toy Story 2 every time!
We are also thrilled that Emmett gets to borrow a KidsWalk for the next few weeks. This is a really cool walker set up that bears all of Emmett's weight but allows his feet to be on the ground. Emmett only had three short sessions in it, but he learned to push himself backwards using this hands and feet. The smile on his face when with his legs only he is moving himself backwards! This is such a beginning stage and so obviously even tinier than baby steps, but it is absolutely a step. This little boy is starting to take steps. He's starting to walk!
You're probably wondering about the stroller title. Emmett got this cool stroller when he was two so it will still be with him for years to come. However, it is not Emmett's first choice for transportation. And, Emmett's power chair - in his own words - would just "Stop"! Sometimes it would stop more than it would run so it was very frustrating for everyone as it was malfunctioning terribly. As a result it went in for repairs - literally on the same day that Emmett went in to Vancouver to prepare for his injection. And his chair came back yesterday. When his mom told him that the shop phoned and that his power chair was on it's way back he paused and then cheered. It took a moment for us to decipher what he said next but as he kept repeating it, there was no question that it was 'Hurray! No More Stroller!' This little boy loves the independence that his power chair provides.
August 19th Emmett is going to be rolling in Charlie and Florence's 10K to End SMA. He has named his team the Orange Hippos. Emmett has already raised $250 for the fight against SMA. If you would like to sponsor him, you can click on this link: Click here
We stopped to see the ocean at Squamish, B.C. That's Shannon Falls in the background. The wind was strong enough to blow us over. We almost didn't get out of the car as we thought Emmett would hate it. Rather, he absolutely loved it!
Emmett is raising funds for CureSMA Canada. Click here to go to Emmett's personal page on the Running Room to make a donation. Any amount would be appreciated. If this link isn't working, then copy and paste this text into your internet browser.
On August 19, 2015 Emmett was just a few months old and he was diagnosed with Spinal Muscular Atrophy, Type 1. We already knew that Emmett was struggling. He couldn't hold up his head. He couldn't move his legs. His strength in his arms - his entire body - was failing quickly. The specialists at B.C. Children's Hospital told his parents that there was no treatment. But that there was an experimental trial which Emmett might qualify for - and he did. Now, this experimental drug has been approved in Canada, the U.S.A., and several other countries. Funding has yet to be sorted out in Canada and this is obviously a challenge, but this drug works miracles. Spinraza, the name of this drug, is a treatment. Emmett requires a lumbar puncture every four months. He endures this like a champ and we know that this ten kilometre roll through beautiful Stanley Park in Vancouver is going to be amazing. It is also going to take forever because, well, Emmett is three. Need I say more!
Yes, I do. That is that more research needs to be done to find a cure. A treatment is incredible, a CURE would be beyond belief. Please support us.
Are those links not working for you! Then try this.
1. Charlie & Florence's 10K to End SMA - and then click on the Fundraising tab. Step 2 is next.
2. Enter Emmett Willms in the behalf of box, then under search by name enter Emmett's name (it should pop up before you've finished typing it). There are several other Orange Hippos, so you can sponsor them if you chose. The funds all go to support the same great cause.
Who Are The Orange Hippos? We are!
Yes, that is us. We are the Orange Hippos. If you're thinking that this is not the most flattering name, well, maybe it isn't. Some might say that it is quite appropriate - although none of us are orange. Personally, I'm incredibly proud to be an Orange Hippo. I honestly cannot think of anything better. For you see, Emmett has a lot of say in our combined households and when he chose the team name, that became our team. He had three names to choose from and I cannot even remember what the other two names were. Suffice it to say that they were not memorable. Plus, Emmett didn't like them. You may have gathered by now, that if Emmett likes and approves something, then I adore it. I'm his grandpa so I can do that!
If you've been reading the blog then you know that Emmett loves Hippos. He went through a number of animals early on, but Hippos have been a favourite for nigh unto two years. (I've always wanted to say 'nigh unto' so I deleted nearly and typed in 'nigh unto'. And now look at how many times I've used 'nigh unto'. Things like this make me happy.) Orange is his favourite colour. It has been for n ... nearly two years. Carrots are his favourite food - because they're orange, of course. They are also a lot easier to hold that peas or watermelon. Plus one of Emmett's favourite squeeze toys is a little orange hippo. So Emmett instantly chose the Orange Hippos as our team name.
You may be wondering what team this is. Well, of course, this is Emmett's Team. We are going to be walking/rolling/running in Florence and Charlie's 10K to end SMA. And we are looking for people to sponsor us - tax receipts are available. This run takes place on August 19, 2018 in Stanley Park, Vancouver. If you want to walk/roll/run with us, you're more than welcome to. We would love to have you join us! Details are in links at the bottom of this blog entry.
What is amazingly special for all of us Orange Hippo's is that it was on August 19, 2015 that Emmett was diagnosed with Spinal Muscular Atrophy, Type 1. Three years ago. Oh my goodness, that is a day that we will not forget. Ever. All of our lives changed in an instant - and we were sort of preparing ourselves for some difficult news. There is absolutely nothing that can prepare you for a five month old getting a diagnosis of Spinal Muscular Atrophy, Type 1. A disease that three years ago had no medical options for treatment. A genetic disease that took away the life of most little ones afflicted with it BEFORE they reached two years of age.
10 K is absolutely nothing compared to the fight that Emmett has had for his entire life. Emmett is looking forward to participating in this walk. He has had his power chair tuned up and the speed limiter has been raised from 50% to 75% - so he can move along at a brisk walking pace. He may tire me out! Fundraising efforts like Florence and Charlies 10K to end SMA have helped with research so that treatment, like the miracle drug Spinraza, has not only been discovered but is the ONLY approved treatment in Canada, the USA, and many other countries in the world. This drug is not a cure, it is a treatment. It is a miracle, but we want the miracle of a cure. So even a small donation to our walk and roll (look at me, did you really think that I would be running!) will help CureSMA Canada. These funds help everyone afflicted by this disease. (*These funds do not go to Emmett. He does benefit from them. These funds go to CureSMA Canada to help with research.)
The walk itself is named after Florence and Charlie, who are two little girls. Florence lost her battle with SMA. Charlie also has SMA Type 1 and is now on Spinraza and is fighting this genetic disease with everything that she has. The girls' parents started this run a few years ago and they are working hard to raise funds to find a cure for SMA. All funds raised go to CureSMA Canada. You see, there are children and young adults across our country that are fighting this disease. And now they're also fighting to get access to Spinraza, the only treatment that is available for SMA. This drug wasn't available in 2015 when Emmett was diagnosed. There was no available treatment. Emmett was lucky in that he was one of 124 kids from around the globe that was invited to participate in a blind study for an experimental drug. The drug that was eventually named Spinraza.
This, by the way, is Po. Po is the latest Hippo to join Emmett's menagerie of stuffed, rubber, and plastic hippos. What is unique about Po is his size! We have decided that Po is a grandpa hippo! Po has guarded Emmett at night. The issue with this is that Po has absolutely startled (scared the pants off, to be truthful) both Alisha and Josh when they checked up on Emmett in the evening. A dark room. A large creature hovering over Emmett. You get the picture. Emmett loves sleeping with a few choice members of his menagerie. He invited Po into his bed once and quickly kicked him out. Po is just too big!
To make a pledge for the Orange Hippos or, even better, to sign up for the run, please click on this link to the Running Room. https://www.events.runningroom.com/site/?raceId=15056, this will take you right to Florence and Charlie's 10K event. Then go to the Fundraising link. There click on "Search by Name" and type in Alisha Willms. She is Emmett's mom and our Orange Hippos' Team Captain. Then you can pledge your amount.
To sign up to participate, click on the Registration link. Select the Team 10K. Then select a username or login with your facebook account. As you work your way through the form, click on Team Member. Another field will appear where you can select the Orange Hippos. The password that you need to complete everything is
Thank you for your words of encouragement, your moral support, your prayers, and for considering sponsoring us for this worthy cause.
Emmett is a busy boy. He is constantly on the go. This month our blog is going to be a photo montage of events Emmett has participated in - things he loves doing. Enjoy! We will start off with our little show off posing for the camera. To help keep things in perspective - when Emmett was one year old and then he would have to be 'posed' for a photo. And he was in that position until you moved him out of it. Now as a three year old he is able to pose himself! What a change!
In this series of photos, Emmett is considering a career in modelling. He's holding his face to, obviously, highlight his cheekbones!
The photos above are all taken in Emmett's front yard. The blossoms have been amazing, although late, this spring. As much as possible, Emmett loves being outside!
A day trip to Harrison Lake allowed Emmett some awesome scenery and to meet new friends.
Emmett loves playing cars ...
and he loved going to the race track to cheer on his grandpa and his grandpa's car. We were quite surprised that the noise did not bother him.
The aquarium is a really great place to visit. Although the Zoo is his favourite. Emmett knows how to spell Z - O - O so his mom and dad can no longer make plans by spelling the word!
The local tulip farm is incredible. A huge thanks to Canuck Place for hosting an evening there!
One last cheesy pose from a little boy who has stolen our hearts!
Emmett has just had his power chair adjusted. Now his third gear is as fast as his fourth gear used to be. His fourth gear has jumped from the speed of a slow adult walk to a brisk adult walk. This little one is getting places faster. And that is a good thing, because Emmett is planning on going places!