Regression

I just wanted to have a quick convo here because in the last few days I’ve had 2 Moms who’ve been told that their child is regressing again. We have no way to scientifically measure regression, or even say someone is definitely in regression. It is an observational diagnosis. Which means it can be wrong. The very last thing in a long list of possibilities is regression. If your child is feeling poor, or in an anxious period, if they are feeling under pressure, they might just chill at the baseline. What I mean by chilling at the baseline, is

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No ordinary girl

I’ve started this post so many times, but I always come back to the same thing. You can only be described as exceptional when you spend every second of every day proving every one wrong. That is what these wonder women have been doing for at least 21 years (in one case 58 years). I can’t tell you what it has meant for them; I no longer dare to think I can understand what goes through the minds of people afflicted by Rett syndrome. My hope is that one day they will tell you themselves. But why do I have

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Keep looking forward.

In October we called our awareness campaign the HOPE campaign, because we wanted to talk about the things that we are hopeful about. We wanted to talk about how all those little things are slowly coming together, helping us progress, and how every day we are beating Rett syndrome a little bit at a time. If last year was the year of hope, then my hope for 2016 is that it’s the year of progress. No matter how small the steps we make, my New Year’s wish is that we keep looking forward. I don’t just mean in a research

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More about the #REALLIFERETT Campaign

Trish and I discussed the #realliferett campaign for some time, even after she had finished the blog post she was worried that it might be too raw, too emotional. What she has done is incredibly honest and brave. I think most parents dealing with Rett syndrome are brave, but society doesn’t like them to be honest. This is what Rett syndrome in a society that chases perfection does. It elevates the pressure on a family by making you think you have to answer some perfect expectation. People say you were chosen because you are strong, but that’s not true, you

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Real life Rett

#realliferett was born in a moment of deep frustration, a ‘screw you all, this is what I have to deal with’ kind of moment in the midst of yet another hurdle in the life that is Rett Syndrome. I was lying next to Lily in her ‘sick bed’ that we set up in our bedroom for times such as this one, when Lily is unwell and we need to have her close, to hear her breathe, to comfort her, to make sure she gets through the night. It was late afternoon and still in my pajamas, hair unwashed, black circles

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Hope is in the heart of us.

It’s leading up to our second year of supporting Awareness Month as Army of Us and we’ve decided to do things a little a differently. For many families who live with Rett syndrome, Awareness Month is an exhausting month-long reminder. A constant barrage of facts and statistics roll up your wall, as we all share images and stories about Rett syndrome, desperately trying to create awareness. October has always been a tough month, tough to prepare for and tough to manage, with so much expectation and added responsibility for families; putting this kind of added pressure on you is just

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