Thanks for taking the time to visit my JustGiving page.

On  September 16th last year one of my closest friends gave birth to her second son, Edward. Exactly three months later to the day she found herself taking him to A&E. He’d had sickness and diarrhoea for a week. The doctor thought he looked fine and believed it would no doubt only last another day or so, but her mother’s intuition was telling her something wasn’t right. At A&E they said the same: he looked healthy, however as he was so little they would do some blood tests to be sure. They all came back clear. Relieved they started getting ready to leave, but it was suggested they should test his urine as one final check. There was the tiniest amount of blood in it.  Heading off to investigate it, moments later they came rushing back. Edward’s kidneys had failed and his life needed saving. 

Edward has been in hospital ever since, frequently undergoing surgery.  Shortly after Christmas it was discovered that he has Primary Hyperoxaluria, a rare condition characterised by the overproduction of a substance called Oxalate due to a deficiency of an enzyme in the liver. He currently has to have dialysis for eighteen hours a day to try and get rid of as much of the Oxalate as possible, as if it builds up in his body it will start to shut his organs down.

I am raising money for a team at The Centre for Rare Diseases at The Queen Elizabeth Hospital in Birmingham who focus their research on Primary Hyperoxaluria and specifically the deficient enzyme, which is causing the overproduction of Oxalate in little Edward’s body. They are very close to having found a way to orally replace the enzyme which would mean no liver transplants for patients like Edward.

Whether you think it’s a good idea me cutting all my hair off or not, I’m sure you’ll agree this is a fantastic cause. Thank you so much for your support. 

As well as raising money for the team at Queen Elizabeth’s, I am donating my hair to The Little Princess Trust who make wigs for children with cancer. 

Thanks again, 
Nicola 


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