Page last updated at 08:08 GMT, Tuesday, 13 May 2008 09:08 UK

Scout Robert, 13, waits for donor

Robert Edwards
Robert Edwards, 13, is waiting for a kidney transplant

Teenager Robert Edwards is one of the hundreds in Wales waiting for an organ donor to come forward.

Robert, 13, from Dinas Powys near Cardiff, suffered kidney failure after a virus damaged the organs when he was just three years old.

For two years he has had dialysis 10 hours a night, seven days a week.

His family said it has been hard for him to adjust his life around dialysis, but he tries to lead an active life and enjoys time spent in the Scouts.

When he was three doctors believe a virus caused Robert's kidneys to be irreversibly damaged by cysts.

Despite suffering with kidney failure, they managed to contain his condition with medication but eventually two years ago Robert had to turn to dialysis.

Now Robert is prevented from doing many things which his friends do and which he used to enjoy.

"Sometimes I do think why I'm the only one in my school - why it's just me who has dialysis," said Robert.

"I can't go swimming as much as I often did. I used to go out with my grampy every Sunday. Now I can only go at least once a month.

"I used to be able to play football for Dinas B but I'm not really physically fit for it."

However, he tries to lead a full a life as possible.

He enjoys camping, playing tennis and bowls.

He also proudly wears the collection of badges he has earned from scouting.

"I do like playing bowls a lot," said Robert. "It's great fun. Being in the Scouts is good to and I want to earn loads more badges."

His mother Jayne said deep down they know Robert will never be well until he has a transplant.

Robert has been waiting longer than most children his age for a new kidney and Mrs Edwards admits it's been a difficult and frustrating time.

The family has been unable to go on holiday for the last two years in case they receive a call that a donor organ is available - and a suitcase has been packed with hospital clothes ready for that time.

"You try and keep yourself occupied and make things as normal as possible for Robert, but sometimes you reach a point where it just snaps," she said.

"It must be the same for every parent whose child is ill - you think you can keep going, but in the end you do have moments where you break.

"Every time you see a strange number on the phone you think 'Is this it, is this the call saying a kidney is available?'".

Mrs Edwards said it was difficult know that "something tragic has to happen for your child to be given a second chance".

But she added: "The hope for us is knowing that so many people have already joined the Organ Donor Register wanting to help people like Robert. That's what we hold onto."




SEE ALSO
Kidney patients rally for changes
12 Jan 08 |  South West Wales
Father cycles for transplant sons
03 Feb 07 |  South East Wales

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