By Beth Johnsson
Every year we hold our ‘virtual walk’ for Rett Syndrome Awareness Month in a big, beautiful park close to home and ask friends to join us. We usually have a group of around 30 people coming together to walk the route and then spend the afternoon enjoying homemade cakes and chatting/playing together in the park. Hannah loves it: most of her favourite people come along and she revels in the attention and love she receives.
This year, of course, this isn’t possible. And yet ironically, this is the year Hannah needs it more than ever.
Lockdown hasn’t been easy for her: she is highly sociable, loves being with friends, enjoys school, needs her therapies and craves engagement and activity. Even with three little brothers in the house, six months at home were tedious and they took their toll on her both physically and mentally. She has lost mobility, her seizures have worsened, her anxiety has increased, her breathing has deteriorated. Rett Syndrome hasn’t stopped for Covid.
Of course, a stroll in the park with friends can’t fix these problems, but we knew it would be another loss to Hannah’s well-being if we simply cancelled the walk altogether. So, we came up with a different plan.
Instead of meeting up and walking together, we’ve asked all of our friends to plan their own 5k route which includes, at some stage, our house. Across the next three weekends of October, they’ll be dropping by separately for socially-distanced tea and homemade cake on our driveway, and Hannah will get to see all their smiling faces after all.
On the 1st November, we’ll take our own family 5k walk, swinging by as many homes of our friends as we can, taking more cake with us for more driveway get togethers!
As a little extra, we’ve also decided that for every person who drops into our driveway as part of the Worldwide Walk, we’ll pop £2 into our savings pot ready to be doubled in The Big Give on 1st December – another small way to make a bigger impact.
Rett Syndrome hasn’t stopped for Covid, so our efforts to fight against it, both on the small scale of Hannah’s here and now and on the larger scale of research and the future of all those with Rett Syndrome, can’t stop either.
You can sign up to the Reverse Rett Worldwide Walk here and make a difference during #RettSyndromeAwarenessMonth