Happy Easter!

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6am wake ups and bags full of chocolate. I hope they crash soon! We put Oliver in his push chair from Cruisers to level the playing field. The kids did alright. We will see about the parents! We will definitely be dipping into to their winnings tonight! ๐Ÿ™‚easter2

Welcome to the family Arthur!

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Since loosing our 13 yr old Goldendoodle George just over two years ago, we have been thinking about another dog for some time. We are dog people. We miss the long walks and dog hair on our black pants ๐Ÿ˜‰ Myles has been doing a lot of research into breeders after two failed attempts to adopt a rescue. Without telling the kids we found and picked a puppy in early March, and then brought him home on April 1st. NOTย an April fools joke!!! Meet Arthur! He is a medium sized (expected size 50-60lbs) Goldendoodle (George was a standard size at 100lbs) and is named after Myles Grandfather, like George was named after both our other Grandfathers. He is already settling in nicely and the kids were over the moon happy to have a furry little brother!

Concert Time!

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For Christmas we got Stella tickets to one of her favourites – Ariana Grande! We have tried to do more “experience” gifts with the kids – a special outing, or just one-on-one time as a special treat. We had such a great time at the show – cat ears and all! ๐Ÿ™‚

 

Cruisers!

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Since February when we went to the Abilities Expo and visited their booth and met the lovely Kathy, we’ve been attending Cruisers Multi-Sport in Brampton once a week. The drive is brutal, but both kids LOVE it! Oliver gets to use a sports chair too and we play tag, what time is it Mr. Wolf, parachute and lots more. Its a wonderful group of kids and parents and we love that everyone gets to play together! ๐Ÿ™‚ Check out their website if you’re interested in more infoย http://www.cruisers-sports.com

CTV interview

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So over the Christmas holidays we were approached by CTV to do a story on Spinraza (a treatment for SMA) that was given FDA approval on December 23rd.

http://www.ctvnews.ca/health/outrageous-price-approval-a-concern-for-drug-to-treat-deadliest-genetic-disease-afflicting-children-1.3292642

Some backstory…we applied for the Type 2 study out of London about a year ago with Dr. Campbell but were unsuccessful (Stella is too weak of a Type 2, but also too strong to qualify for a Type 1. Extremely frustrating but understandable due to the rigour of the trials to get approval.). We have also been following families all over Canada and the US who were on the trial and seeing fantastic results – children dosed before symptomatic show the most stunning results from sitting, crawling, and even walking. Older children seem to have more energy, more strength, and more movement.

As of right now, Health Canada is deciding the safety of its use here. We have been told to expect a decision in July/August. Then, as health care is provincial, each province will decide how much (if any) of the cost they might cover. Then, unless the province covers it fully, we will have to see if insurance will pay for it.

We still have more questions than answers and the waiting is extremely difficult. Although we are thrilled for our SMA families that are receiving the treatment already, we are heartbroken waiting for our turn. We are hoping maybe early 2018 at this point, but we still aren’t sure. We will keep you posted.

Please note, we have not shared any of this with Stella as we don’t want to get her hopes up, and feel there is no need to burden her with this stress until we know more.

Abilities Expo

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We had a great time at the Toronto Abilities Expo. Its an annual free event that showcases services and vendors. Stella loved chatting everyone up, getting her face painted and met we some new friends!

Since we are looking into a different adaptive van that would give us more room and allow Stella to sit closer to us, it was a great spot to see many of the options available – all at once!

We also tried out a super cool adapted bike and have also found an indoor wheelchair sports league we are going to join!

http://www.abilities.com/toronto/

http://www.frankmobility.com/duet.php

http://www.cruisers-sports.com