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'Organ donors and their families are heroes in my mind'

By South Wales Evening Post  |  Posted: December 04, 2012

Helena Jones with her daughter Helen Jones wearing their Heart to Heart campaign T-shirts

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ORGAN donation saves lives and today a landmark bill goes before the Welsh Government to get more people on the register.

The Human Transplantation (Wales) Bill introduces legislation to create a soft opt-out for organ and tissue donation, meaning consent is automatic, unless you say otherwise. It coincides with the launch of the Heart to Heart campaign to raise public awareness.

The bill is being supported by Helena Jones from Glynneath whose family has experienced its fair share of heartache and health problems — four of her five children have needed kidney transplants.

"When my eldest son Robert became ill at the age of 23 — he's now 50 — we were shocked to find out that he had a rare kidney condition known as glomerulosclerosis," said 79-year-old Mrs Jones.

"But even though this was dreadful news I insisted that my other children also be tested. I know the doctor thought I was over-reacting, but sadly I was proved right when Wayne, Richard and Helen were found to have defective kidneys as well. Only my youngest child, Cathryn was clear.

"At the time I was told my children probably wouldn't need dialysis until their early 50s. Unfortunately they needed it in their early 30s.

"Living with dialysis is not living at all, it's merely existing. Unless you have first hand experience you don't realise how difficult it is. You can't eat anything containing salt, and your fluids are very restricted.

"Initially my children were treated with dialysis at home, but after three years or so, as their conditions worsened, they had to go to hospital three times a week, every week to receive dialysis.

''But don't get me wrong, it was still a lifesaver — it kept my children alive until an organ became available for transplant."

She is a passionate supporter of the Welsh Government's proposed changes. She wants Wales to follow countries such as Spain, Belgium and Croatia and change from an opt-in system, to an opt-out system.

She added: "I hope the new law goes through, as people in Wales are dying waiting for transplants on the current system. Organ donors and their families are all heroes in my mind — they give other people the gift of life. I am so grateful to them for what they've done for my children. My second son Wayne sadly passed away two years ago but I am still thankful for the time he had and remain passionate about organ donation."

The introduction of the bill begins the formal process of its consideration by the Assembly.

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