Disneyland – Families of SMA Conference

Finally getting down to writing about our amazing trip to Disney…



Sarah, Stella, Oliver and I flew down to California to meet up with my sister Holly and her four kids to attend the annual Families of SMA conference and of course do that disney thing. The thought of flying down with two kids under the age of three along with Stella’s wheelchair and medical equipment was a bit daunting and the reality was far off what we expected. We just barely managed to lug all of our stuff through the airport and if it was for the amazing staff at Air Canada we might have lost our minds. On the way down we met a particular baggage handler who was in charge of packing away Stella’s wheelchair. He stood on the bridge and patiently watched me take her chair apart and stow the more important bits and then whisked it away to be put on the plane. Just before the cabin was sealed for take off he appeared at the front of the plane looking for Stella. He hurried down the aisle and showed us a picture on his smartphone of the chair safely tied down and crated.

We arrived in LA way too late eastern time and the kids were both… trouble. We arrived at the Disneyland hotel after a short shuttle from the airport and found Holly and her kids sleeping in anticipation of a big day at the park the next day (which at this point I was kind of dreading because I knew Stella and Oliver were going to be tired). We spent the next two days in the park. We rode as many accessible rides as we could and Stella met Tinker Bell, Rapunzel and had a nice moment with Merida from Brave. She drove her chair right on up to her and told her that she needed to be more careful with her brothers. Priceless.


We also spent time at the pool and the cousins spent some quality time goofing around.Fam Rainforest


The conference started on the Friday and ran through to sunday morning. It was amazing to be back amongst so many other people dealing with the same challenges as us. The sessions we attended were incredibly useful and were much less daunting than two years ago when we attended just a month after receiving a diagnosis for Stella. The news from the research front was very encouraging but it is hard not to think that despite the advances these drugs and treatments may come to late to help Stella. If you have the means and you haven’t already please consider donating to FSMA Canada to help the cause.

I would also like to give a shout out to both of my nieces, Jessica and Kate. [Although I only got a picture of Jessica in her shirt] for volunteering in the daycare centre at the conference. You guys are amazing!


On saturday after dinner we were walking back to our hotel when we were stopped by a Disney cast member named Wayne. We had a fun little back and forth about Alice in Wonderland and he gave all 6 kids UN-Birthday buttons. Then he asked if we were there for the conference and what Disney could do better next time. Without hesitation my sister told him they needed to bring the popular characters over to the hotel for the kids at the conference [many of whom can’t spend a whole day in the park going from attraction to attraction for a multitude of reasons]. He responded by asking Stella who here favourite princess was. She told him Cinderella and he told us that he knew her and that he was going to get Stella a signed photo! We gave him our room number and left. That night Wayne called to ask if her could stop by our room. A little suspicious we agreed and kept Stella up anticipating a surprise. We were not disappointed. Wayne arrived at our door with passes to the princess experience with Cinderella. Hair, make-up, nails, and a princess dress at Bibity Bopitty  Boutique and then off for a private party with the princesses. AMAZING! One hitch. We didn’t have passes to the park for the next day. Let’s just say that another AMAZING disney employee who worked the desk at the hotel sorted that out and ………….
LittleLady Bip_Bop_Boo Ariel Cinderella

A very special thanks to the staff at Disney and a special thanks to Wayne [below with our gang] and Evelyn at the Disneyland Hotel!


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