Day Two FSMA Conference

We had a great day today. In the morning we heard about all of the current research and science being done in the search of treatments or a cure for sma. The reality is that no matter how promising, the time it takes to do thorough drug testing and research means that Stella won’t see these treatments for a very long time if ever, but it is nice to know that the top people involved think that this disease WILL get a cure.

After the morning session we went to our first workshop for families with children with type2 sma. It was nice to here their stories, although some of what was discussed was difficult, it gave us some things to look forward to and out for.

On the way to the workshop in the morning we stopped to talk to a vendor that had some power wheelchairs. Since we have been here everyone has been telling us if she is type two and has the ability to operate one we should get her in to one ASAP. So, we asked if we could put her in one and see how she did. It was the first time since Stella’s diagnosis that I looked at her and saw a normal little girl who was independent from me and Sarah. I think it must be the same feeling other parents get when their kids start to walk. Anyway, I just managed to hold it together but i was really happy. Needless to say we are going to talk to our caregivers back home and get the ball rolling on that. (apparently they take a long time to build because they are built to suit)

Tonight we went to Epcot with all the participants of the conference to watch the famous light show and it POURED! They set off the fireworks rain or shine though so we enjoyed it all the same.

Pics below. My sister posted a vid of Stella in the chair to my wall on FB if you want to see it. A full length version of the vid will be posted to the blog when we get back to Toronto.




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