mySMAteam

Over the past 10 years my favourite experiences have been focused around the SMA community. From playdates, conferences, bowling, fundraisers, summer camps, to one-on-one conversations. I have learned so much from other families and people with SMA, and have been so happy to share our story and advice to help others.

From accessibility renovation idea, equipment, to surgery prep and support. I love to help others avoid some of the mistakes we’ve made, and share the things that have worked for us and the hacks we’ve learned along the way (most of these are Myles DIY-related, he is the MacGyver of SMA dads).

Now that life is virtual, I have been so longing for that community and connection and I have really enjoyed my experience with the mySMAteam website. Over that past few months, it has added another way to stay connected to our SMA family while we can’t do anything in person. It is similar to other social media platforms but without the extra “stuff”. Everyone has been super welcoming (theres is literally a welcoming committee) and there are people with all types of SMA, from all over the US and Canada.

I’ve been able to use their “Q&A” section to ask questions about new equipment (Stella is finally getting a new commode chair that we’re super excited about), and been able to ask questions to older SMA women about their experiences with puberty and SMA. Puberty is daunting for any parent, so this has so helpful for Stella and I as we trust knowing the advice comes from similar first-hand experience! We were able to take this advice to our doctors to then get their input, and we now have a plan in place for the future.

One of the other great resources that mySMAteam has is their SMA-related articles. These are great, especially as they have some COVID specific articles, information that we’ve been hard-pressed to find elsewhere regarding what getting COVID would look like for Stella or us as she is at great risk, and vaccination information. It is such a relief to validate the worry we have about COVID as any respiratory illness are the worst for SMA patients (and those of you who’ve followed us for a long time, know how sick Stella been over the years with various viruses to even the common cold), and our fears of Myles and I getting sick as we would still have to manage her care as her primary caregivers (we have unfortunately lost most of our nursing and help at home because of COVID). My number one fear is not being able to take care of Stella due to COVID (or any other illness or injury). But the articles also eased my worries, as it reminded me that we are “expert quarantiners”. We have years of experience of avoiding colds and flus and we know how to keep ourselves safe(r). We’ve been buying masks, gloves, sanitizer and wipes before it was cool (and hard to find!). It was great to remember that we can do hard things and that we have the tools and experience to do so.
Considering we are almost a year into the pandemic this information was a great resource for navigating this especially hard time with such a serious underlying condition.

I can’t wait for more people to join to add more stories, more experiences, and more support for each other!  

You can join the free mySMAteam community here. 

*This post is sponsored by mySMAteam

Hello? Is it me you’re looking for?

This is sponsored post on behalf of mySMAteam.

Anyone else missing people? ????? It’s been a loooooooong 9 months, so I recently signed up for mySMAteam – it’s a social network for those living with and caring for someone with Spinal Muscular Atrophy. I’m looking forward to checking it out and meeting new people!

It was easy to sign up and create a profile. And mySMAteam is a secure, judgment-free site, which is great! I’ve already connected with some new people and it’s been great to share our stories.
I’ve also really enjoyed the articles on mySMAteam. Posts are written by medical professionals, as well as people with SMA! It’s great to have authentic content and gain insight into treatments, therapies, and living life with SMA.

Over the next month I will be sharing my journey in the community with you!

I’m excited for you to join me! All of my fellow parents and friends living with SMA you can join too (it’s free!) – Link below 🙂

http://bit.ly/3mOOlgz

Adaptive Bike

Two years ago we tried an accessible bike at an Accessibility Expo. Stella loved it but it was very expensive, and Myles had rigged our old chariot with a car seat, so we were managing. Well many spinal lengthening later, the car seat no longer fits Stella, and we are definitely not legal, nor safe, so we re-visited the adaptive bike.

The bike is amazing as it will accommodate Stella into adulthood. It also gives her a much nicer view than staring at our backs!

If you are interested in helping us make this happen for Stella, here is the link, we are hoping to have this for summer so we can continue to have biking adventures and maybe a few trips to get ice cream! 🙂

 

Health Canada approves Spinraza!!!!

On June 30th around noon we got the fantastic news that Health Canada has approved Spinraza for treatment of all types of SMA. This is such great news, and we were thrilled with the full approval across all types as this has been a problem in other countries in regards to access. To read the full press release click here.

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As we were at the SMA Conference we had a toast of champagne with some of the other Canadian families.

There is still a significant number of steps to proceed through before any patients begin to get dosed. We are told it could be 1-2 years still. So mixed emotions of happiness/relief and continued anxiety/frustration. But a step in the right direction. Below is a flowchart of the process to follow.

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Advocacy

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If you get a chance, check out the July 2017 edition of Maclean’s Magazine. We contributed to a short article about Spinraza and advocating for Health Canada to approve it as the first treatment for SMA patients.

Team Stella!

Hello Team Stella!
We apologize for the late email but its been a very busy spring!
Stella turned 7!!!! in April, and then had her 3rd spinal surgery to lengthen the rods they placed back in September. We have also had a significant number of doctor appointments to address Stella’s complex needs. We saw Neurology to discuss the upcoming Health Canada decision on (hopefully this June/July) approving Spinraza (the first ever SMA treatment), and to see what timelines and other steps are next before we might expect to see dosing. The farther we get into this, we realize, there are still lots of unanswered questions. Our new expectation is maybe next winter 2018 if all goes well. We also had an Orthopedic checkup which confirmed her rods are working well to correct her scoliosis and the incision has healed nicely. We also had a Respiratory check up where Stella stunned them with her transformation of 10lb, and 6 inches of growth since they haven’t seen her since last summer. They were very impressed with how the rods have helped her respiratory health as well by opening up her chest and allowing her diaphragm to function more normally. We have also been having lots of new wheelchair trials and fittings as we prepare for getting Stella a new power wheelchair. This chair we are hoping will allow Stella more control in adjusting herself for comfort as well as allow her to stand!

Our summer is also looking very busy with a trip to Florida for the annual SMA conference, SMA family camp in Montreal, and our first time at Easter Seals Family camp in London! We haven’t been to the conference for four years, but with the amazing medical breakthroughs happening in the USA we are eager to hear from the experts as well as the families who are apart of the trials. We will be driving our van down at the end of June and staying for a few days afterwards to hopefully get a day or two at the parks.

Because we expect it to take us a full three days of travel and of the tight deadline we don’t think we will be able to make it to the annual Rebecca Run on Saturday July 8th at Fairy Lake in Newmarket. We just wanted everyone to be aware. We hate to disappoint our loyal team members, but would love it if you still wanted to go and represent! The link for the registration is here: www.rebeccarun.com/run-registration.html Please choose “Team Stella” and note that the registration cost goes up on June 11th. You can pick up your Canada 150 red race shirt the morning before the run, but there is no race-day registration. The 5Km walk/run begins at 9am, the kids 1Km fun run (free!) at 10am, and the 3Km walk/roll/run at 10:15. Race registration includes a hotdog lunch afterwards.
In lieu of the of the Rebecca Run, school friends of Stella have generously offered to hold a Stella Run for us in Mississauga on Saturday June 24th at 9am. We are fundraising for our portion of Stella’s new powerchair. This new chair will see Stella through the next five years of her life. We are trying to give her more independence as well accommodate her growing needs. The governments ADP program generously covers a significant portion of the basic chair, however there are additional functions she needs for safety, comfort, and independence. The total cost of this chair is over $50,000. If you would be interested in participating in this run/walk/roll please email mrs.denne@gmail.com for more information to register. We have also made a Facebook event that you are welcome to share.

Thank you again for your continued support! We couldn’t do this without you! Go Team Stella!!!

XO The Bartlett Family

Spring!

spring

We are enjoying the (finally!!!) warmer weather. It seems to have taken longer this year, but we are enjoying walks with Arthur as well as time in the backyard, and lots of swings once again! Stella has made a full recovery. She was back at school a week after her back surgery and even performed in her school musical! Her wound is looking great, and the last of her steri-strips covering her dissolving stitches has finally fallen off, so she is cleared for baths, and swimming!!! Perfect timing!!!