Riley, 3, needs double transplant

Stacey Greenwood, 22, with son Riley, 3

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A Rochdale toddler needs a double transplant to help him lead a normal life.

Riley Greenwood, 3, from Shawclough, needs a combined liver and kidney transplant with a full plasma exchange to rid him of an extremely rare disease.

The operation he needs to undergo has only been carried out eight times in the whole world.

Riley will be the first person in the UK to have the transplant for this illness.

Riley suffers from Atypical Hemolytic Uremic Syndrome (HUS) and was diagnosed with the illness last summer.

Riley’s mum, Stacey Greenwood, 22, explained his illness and what has happened since his diagnosis last year.

In June 2009, Stacey knew something was wrong with Riley when he didn’t want to go to nursery, following a trip to the GP it was suggested Riley was anaemic. A few days later Riley’s head had swollen so much Stacey rushed him to A&E he was taken straight to the Children’s Ward and later transferred to Pendlebury Children’s Hospital.

There, Stacey was told Riley’s kidneys were only functioning at 15%.

Riley was taken into theatre and had an operation for a dialysis catheter.

The dialysis catheter does the work that Riley’s kidneys don’t do.

It was first thought that Riley had a different strain of HUS related to e-coli which would go after a few weeks. Unfortunately, that was not the case; Riley is now hooked up to a dialysis machine for 10 hours a night.

Following a year of changes in the Greenwood household, including sleepless nights and agonising decisions, Stacey is now ready to sign the consent forms and put Riley’s name on a transplant list.

There were other options available, including a drug treatment, but Stacey concluded that the operation would be the best thing for Riley’s future.

Stacey, a teaching assistant, described the last year as ‘hard’, she said: “The disease is so rare and I am quite scared about Riley having the transplant.

“I get more annoyed that upset. I just think why? Why Riley? When there are so many bad people in the world.

“I wish I could take it off him. I just wonder how he must feel.

“Riley is my life.

"I do have nights when I get upset, but I do it on my own. I get annoyed more than anything.”

This week Riley had an operation for a new dialysis catheter and is currently in pain and every uncomfortable.

Stacey explained that Riley knows what is going on, she said: “Apart from today you wouldn’t know that anything is wrong with him, he loves to run, he’s a menace.”

Stacey described Riley as "perfect and brilliant", she said: “I am very proud of him, he is very resilient and nothing fazes him, he doesn’t get annoyed. He is very brave and certainly a trooper.”

Riley needs a double transplant because a gene in his liver is attacking his kidneys, so to just replace his kidneys would mean the gene would attack them again.

At the moment Riley’s kidneys are functioning at a mere three or four percent whilst his liver is 100 per cent normal.

Riley is in a position where he can wait for the best organs to come along and to have the transplant would lead to a normal life, he would just have to take tablets daily.

Following Riley’s diagnoses Stacey is urging more people to become organ donors, she said: “I think more people should become organ donors, there is such a shortage on the list. You don’t realise it until you see all these children in hospital waiting for organs. Some die waiting.”

Stacey concluded: “I have a really big family who have all been so supportive and caring.”

Stacey currently works at St Cuthbert’s High School and was told she would not be paid for any time off following a transplant, however, staff at the school raised £1,000 through charity functions and gave it to Stacey to put away for when the time comes.

“The network of support has been fantastic,” Stacey said.

Apart from getting ready for his transplant, Riley has a busy summer ahead, in August he will celebrate his fourth birthday, next week he will be a page boy at a wedding alongside Stacey as maid of honour and in September he will start at Healey Primary School.