Today Bryce made contact with another HHE Family based in Scotland. I messaged the mum and asked her permission if I could please share her page. Please support this page. It is a page to honour her little girl Edie who heart-breakingly passed away from HHE last year on 16/10/15 aged just two and a half. #flyhighedie
Reading this page today, of course hit home. That could have so easily have been our family that I was reading about. But it wasn’t and now I feel guilty. It is a strange world this one that we get catapulted into. Nothing prepares you for the mix of emotions that you encounter while riding this rollercoaster. I think I am getting better, and then I read something about Edie and it smacks me in the face again how fragile life is and there is no rhyme or reason and sometimes, it’s so bloody unfair for such a young person to be taken far too soon.
I have met some incredible people through the platform of Facebook and Rare Connect and as I have mentioned previously I will be sharing pages along the way.
So please take a moment to see what the Murphy family is doing to help raise awareness of HHE and childhood disease. It truly astounds me people’s strength – the posts are written with such love and honesty and maybe that’s what it is. It is the ongoing love that you have for your child, that in moments of defeat, lifts us up. Our children lift us up again.
Fly High little Edie – you were taken far too soon – another guardian angel shining down Fly High Edie xxx