Daily/Weekly Thoughts

Daily/Weekly Thoughts

Happy Birthday!

Emmett is SIX today - on March 9, 2021.

Birthdays are very special. Emmett's birthdays are even more so. Last fall when it was obvious that the pandemic was going to have an impact upon our birthday celebration, we were not worried. Because this birthday the big surprise was to be in a big truck! And as Emmett's grandpa Roger works for Valley Carriers in Abbotsford, we had access to lots of big trucks. Emmett got to go to Valley Carriers' yard - when everything was closed down - and race around on his power chair and look at all of the heavy equipment. Grandma Rhonda had an amazing cake that was designed as a work area with trucks and heavy equipment. Uncle Ben ran the loader and put topsoil into the dump truck, and then Emmett got to ride in the dump truck (fully secured in his car seat, of course). Then he got to watch the dump truck dump the load onto his driveway. Then he got to work with the dirt (it was more than play and no, we really didn't get in the way. At least, not too much!) All in all, it was a fabulous 6th birthday!

Happy Birthday, Emmett!

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Looks like a fun day for all

#20

#20 - March 3, 2021 is when Emmett received his 20th injection of Spinraza by lumbar puncture.

Also on March 3, 2021, Emmett's Aunt Katie and Uncle Josh had a baby boy who is named Elias Mark. Elias lives in Australia! Elias, mom and dad are now at home and all are doing well!

At BC Children's Hospital, everything went well. As you can appreciate, the POKE (as Emmett calls a lumbar puncture) not a highlight of Emmett's week, but he did enjoy seeing a lot of his favourite people at BC Children's Hospital. Plus, he got presents - a Woody the Cowboy and Buzz Lightyear figure set! He doesn't have a dozen of each yet, and he loves them! Seriously, the little kid who has been Woody the Cowboy for the last four Halloween's loves Toy Story toys and he will never have enough!

But enough of that. Did you know that Emmett is a soccer player. Did you know that 2 days after his lumbar puncture that Emmett was out playing soccer? Well, not on a team yet but maybe that will happen soon! You know how last blog we showed you a picture of Emmett playing soccer with a cardboard soccer bumper. Well, that proved to be a bit more dangerous than deemed safe. We were going to rethink our approach when we found out about Sportsablitly BC and we reached out to them. They have provided us with a loaner wheelchair soccer ball and a universal power soccer guard - one that won't allow the ball to go under the chair and risk causing a roll-over (that did not happen with the homemade cardboard one - but it was close!)

Huge thanks to Cheryl who introduced us to Jade at Sportsability BC, Emmett was very patient while Jade was hooking up the universal soccer guard to his power chair, but as it was almost bolted on Emmett said, "Let's Go! I want to play soccer!". And while it was a wet and windy day, we went out and had a lot of fun playing soccer. It was fantastic. Sportsability BC - thank you for making a little boy's day!

March 9th is Emmett's 6th Birthday. Stay tuned because you know that we will be celebrating - in a very pandemic responsible manner!

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Rare Disease Day 2021

February 28, 2021 is Rare Disease Day.

If you know this, then you are one of a minority. Six years ago I had no idea that there was a day that sought to focus the attention of the world on rare diseases.  There may be as many as 7 000 rare diseases that affect millions of people around the globe. These rare diseases may not be well known, but their impact is significant.

The most common characteristic of a rare disease is the small number of people that it affects. For example, in Europe a disease is considered rare when it affects fewer than 1 in 2 000 people. That's 1 000 people in a city of 2 000 000. That is a small group, but if you are one of those people then you know that it is a significant number. Rare diseases are often mis-diagnosed, or not diagnosed at all, by medical professionals. These rare diseases often have limited treatment, if any, and this leads to long term challenges for the health and care of individuals with rare diseases. And their families too.

This is a castle, complete with stables,  that
Emmett built.

Emmett has Spinal Muscular Atrophy, Type 1. It is a rare disease. In the first half of 2015 our families were not aware of it and had never heard of it before. Now we have. Emmett arrived in the world on March 9, 2015 but his diagnosis was not made until that August. There was no treatment available in 2015 BUT there was a drug trial and Emmett met all of the requirements for admission. This drug, now called Spinraza, worked. Emmett's disease does not allow the messages from his brain to be transmitted effectively to his muscles. So basic things like walking, holding things, supporting his own head, sitting up, swallowing, breathing were at risk. When he was seven months old he could not roll over, move his legs, hold up his head, sit up, and was losing the ability to move his arms. He was having trouble swallowing. He had to be lying down as a sitting position would cause him to choke. Sometimes when I say or write this, people think that I'm exaggerating. If I am exaggerating, it is probably reverse exaggeration. I am understating the challenges that Emmett and others with SMA Type 1 face. That is, this disease is probably worse than what you're reading in this blog.

The wheelchair got stuck shortly after this pic.
Emmett's mom and grandma said, "Frank, we
told you this wasn't a good idea!" but Emmett
and I had fun! Well, until we got stuck!

The benefits of Spinraza are not something that are understated. The trial was a success and the drug was approved in Canada, the United States, and many other countries. Two other newer drugs have been approved by the FDA in the United States and hopefully we will see them available in Canada also. But don't relax and think that all is now a rose garden. The physical improvements that Emmett has demonstrated over the past five years are fantastic; from the drug and the fact that he works incredibly hard for all of his gains. His mom and dad do daily physio sessions with him; he has regular speech therapy sessions to work on tongue control, and he has occupational therapy sessions to enhance his large and small motor skills (by the way, during this pandemic season all of these sessions are currently online). For example, he can now hold himself (while wearing his back brace) in a sitting position with no back or side support for almost forever. While lying on an exercise mat he can roll from his left side to his right side - and if it wasn't that he intensely dislikes being on his tummy, he could probably roll right onto his tummy. He can swallow tiny amounts of liquid and pureed food; he absolutely loves tasting every kind of food and his eyes absolutely light up when someone mentions ice cream. Emmett loves painting and drawing but we have had to find the right tools; he cannot use regular children's wax crayons as they require too much pressure to leave marks on paper.

We made a temporary soccer bumper for the 
power chair. But it doesn't work when the ball
is caught in the bushes!

What do you need to do for rare disease day? The starting point is to be more aware. That you're reading Emmett's blog is a sign that you are becoming more aware. Thank you. You can also check this link about rare disease day.

On March 3, 2021 Emmett will be at BC Children's Hospital for his 20th Lumbar Puncture. On March 9, 2021 he will be celebrating his sixth birthday.

February 28, 2021 is Rare Disease Day.

 

 

 

 

 

Emmett is already making plans for camping trips.
We checked out the RV and made sure that it was okay.
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A Time To Give! Part 2

 

Thank you to everyone who supported Canuck Place through Emmett's fundraiser.

$1950 was raised for Canuck Place, and a Canuck Place benefactor doubled that to make the donations worth a total of $3900.

Two of Emmett's Santa Plaques were awarded: one is going to Anne in Ontario and one to Alesha in B.C.

Thank you for your support! Happy 2021!

Orange Hippos - you've got to be wondering what this has to do with a little boy with Spinal Muscular Atrophy, his Canuck Place Fundraiser, and anything to do with reality. The fact is, absolutely nothing and yet absolutely everything. Because this team name/phrase is from Emmett's incredible imagination. In this pic, taken in 2018, it shows Emmett when he still had front teeth and when his Orange Hippos t-shirt still fit him. Emmett is holding the original Orange Hippo, which for several months was his most favourite possession, and playing with his giant hippo, Po. Even now, when I asked Emmett and his mom where the original orange hippo toy was for the headline photo that is above, he could direct me to the exact location where this prized toy was located. No help was required to find Po!

Emmett has many favourite animals, but without question the Hippo is the absolute and ultimate favourite. And while he will rattle off several colours that he likes, there is no doubt that Orange is his 'top of the charts' favourite. In 2018 when we

A 2018 Orange Hippos photo shoot.

were getting ready to participate in a roll/walk/run for Spinal Muscular Atrophy that was held in Stanley Park, we had to come up with a team name. While the adults bounced several ideas around, Emmett's suggestion was "The Orange Hippos"! That name stuck! The t-shirt was created. And the rest is history.

So there you have it, the name the orange hippos represents a little boy's incredible imagination, sense of humour, and love of life. This is Emmett's fundraiser - and the Orange Hippos started from his imagination but has morphed into the team that includes all of his family, friends and supporters.

If you make a donation to my.canuckplace.org/orangehippos then you will be making a donation to support many medically fragile youngsters and their unique imaginations. Plus if you make a donation this month (December 2020), your donation will be matched so every $1 you donate will mean $2 for Canuck Place. As of now, the fundraiser is at $1100 - we are really close to our goal of $1225.

Emmett loves the orange hippos and would love to see every room in the house decorated with them. This, of course, is maybe going too far for some members of the house! LOL!

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