To be honest, writing this blurb is one of the parts of doing a challenge which I like least.

Telling 'my story' is difficult, not just emotionally but also practically. Hannah is now 15 years old and to cram everything Rett Syndrome has taken from her and all the reasons why we desperately need treatments, would take far more words than anyone wants to read here.

But perhaps this sums it up: another mum recently said to me that she feels like her daughter, who is a few years older than Hannah, is now 'living on borrowed time'. 

It is painful to admit, but I feel the same.

Hannah's health is deteriorating and she is becoming more medically complex all the time. The truth is that every night, when I say goodnight, I fear that she won't wake up in the morning.

I'm terrified of being away from her for 5 days because I know that things can change so quickly and dramatically for her. She can go from fine to cluster seizures within minutes. From laughing to blue lips within seconds. It's frightening to watch and devastating to feel so helpless. 

So, I choose my challenges and I put one foot in front of the other to meet them. Hannah has neither privilege and I don't think there's a mum out there who wouldn't walk a lot farther than 2 marathons to give her daughter those possibilities.

Thank you, as ever, for your support, it really does mean the world to me and it really does make a difference.