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, …

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 …

Stella’s Umbrella… ella, ella, eh, eh?

We have been getting a lot of requests for information on Stella’s umbrella so I thought I would do a post to share what we have done. If you make modifications, additions or find cheaper hardware please share in the comments section. Here is a photo of all the parts [including a Spring Clip Clamp …

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 …

Stella’s Robot Arms! – Part Two

If you haven’t already, you should read Part One. We had our first accident. Stella has her WREX connected to her power chair. This makes sense for many reasons but it poses a couple of issues: The first is that she isn’t always in her power chair – she does most of her “playing” etc …