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 email@example.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