Sienna's Angelman Story

We had an emotional moment this week.

The physio and an equipment rep came over to measure Sienna for a standing frame.

Since her OT was able to make it too, they decided to measure her for an adjustable "chair" at the same time.

What they brought in wasn't a chair in any normal sense. It was this massive, clunky metal contraption. It was huge. Our first thought was "we’re going to need a bigger house," followed immediately by "we don’t need this stuff."

The shock must have been written all over our faces because the team was quick to reassure us that she might not need it forever and definitely not all the time.

But in that moment our "overgrown baby girl" suddenly looked "disabled".

It’s one thing to know in your head that your child has a disability, especially when they’re still small and the developmental gap doesn't look that big yet, but seeing that chunky equipment in our living room suddenly changed everything 🙁

Four months since we heard the words ‘Angelman Syndrome.’ 🤍
Today was Sienna’s first appointment at the genetics clinic, we’re still taking it all in but we had the chance to have our questions answered and the path ahead feels a little clearer. One step at a time💙

Happy 90th Birthday granny Marj 🎉🥳🎂🎁
Sienna loves you lots 🩷 she even gives you cuddles! xx