In August 2018, my little girl, Tillie, was a bit out of sorts, she’d vomited once. I took her to hospital, airing on the side of caution, after a few hours some blood tests were done.  She was dehydrated and admitted on a drip. Little did I know that my world was about to be turned upside down. 

At 5:30am, after 3 hours sleep, I was woken to be told she has a disease called Haemolytic Ureamic Syndrome, and she could die!! They’re talking to Great Ormand Street and she’s going to be transferred.  I couldn’t comprehend this.  She could die ?!!! 

Just stop for a second. Imagine being told your child could die. I would never ever wish this on my worst enemy. 

There is no known cure for this disease. It’s caused by the e.Coli bacteria, it affects 1:5000 children.  I knew nothing about this, never heard of it.  And now my babies kidneys had failed, she could fit at any moment as her blood is breaking itself down and shredding her organs. 

We arrived a Bristol Children’s Hospital, after an operation to put a catheter in her neck to her heart she received numerous transfusions, platelets, blood and then 4 hours of dialysis, everyday.. just watching my little girl, lifeless, swollen and helpless. 

She’s now in a drug trial, this drug, that I firmly believe she received, costs £400k.  We won’t know if she’s sustained any lasting damage, but she’s still with us and a very, very precious little bean.

These days were the darkest I’ve ever known.  I’d never wish this on anyone.. to be told your baby cold die.  I hope one day that this is something that can be recovered from.

I want to raise some awareness of this disease and to give something back to these angels that walk among us , who work for the NHS.  

Please support me in this massive challenge.