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'Helen didn't get lungs ... but we’ll make sure other people get them because of her'

“She wanted to live with every fibre of her being.”

LAST WEEK THEJOURNAL.IE spoke to Helen Taylor’s family about the importance of organ donation. Helen, a Cystic Fibrosis sufferer, had been waiting for a double lung transplant for almost a year.

She died on Thursday.

Helen is survived by her mum Frances, dad Liam, sister Louise, brother John, partner Mick and son Luke (pictured below, left).

Here, Frances recalls her daughter’s last days:

“The thing that I’ll carry with me – my everlasting memory of these few days – is how she fought so hard on Saturday. She was losing weight rapidly. Despite this, she put her all into eating food and doing her physical exercise. She needed increased oxygen and collapsed at the end but said: ‘I’m so glad I did that, I’m back on track. If I do this every day I’ll be fit for the transplant.’

“Liam contacted me on Sunday and said there was a big change, she was having difficulty eating and moving. At first we thought she had done too much the day before. I stayed overnight on Sunday, she was really having difficulty. I could see the deterioration before my eyes. On Monday she started to get tremors. She was creating a build-up of carbon dioxide: her exhalation was weaker than inhalation, it was starting to poison her.

“This didn’t mean she was unable for a transplant, it just made her need more urgent, but she was becoming too ill and too underweight.

The realisation hit her: she was going to die. The last few days of mental suffering may be equal to or surpass her physical suffering – which was tremendous. She’s 38 and had a son. She wanted to live with every fibre of her being.

“That night she sat there in a catatonic state saying ‘Luke, Luke, Luke’ on a loop.

“The nurses said this was unusual. I’m her mother and I knew it was because she was in shock that she wasn’t going to live. Her eyes were pleading with me to help her. I told her I couldn’t get Luke now because he was asleep, but that we’d get him in the morning. Helen stared out the window for the whole night – waiting for daylight.

When Luke came in she said ‘I love you’ and he said he loved her. Those were the last words she said. Once she told him that, she resigned herself to die.

“She went on morphine, the real decline was in the next 24 hours. We were all there with her, the people she loved and wanted: me, her dad Liam, her sister Louise, and partner Mick.

“Her brother John came home from Australia on Friday. We debated whether or not we should tell him Helen had died before he got on the flight. In the end we did so he wouldn’t be worried if he got delayed, so he knew he didn’t need to rush. That 24 hours of travelling was horrendous.

He went to the morgue and spent some time alone with her. He went to put his arms around her and he was shocked by the narrowness of her shoulders. He was afraid she’d break. He knew then how hard she had been fighting.

Grief

“Luke was supposed to watch the Toy Show with his mammy in hospital on Friday night.

It’s surprising that a little boy of six feels the same grief as an adult. When we told him Helen had passed away he just cried, he got unbelievably sad.

“I knew it was still on his mind when I put him to bed last night – he didn’t want to go to sleep. He felt exactly the same as me. We started to play a question game. I asked him something about school and he asked me something about work. Then he asked me: ‘Where’s mammy’s body now?’ I told him it was in the hospital. Then he asked: ‘Are they going to put her in the ground?’ I told him they are but that’s only what’s left of mammy – her outside. Her soul is in your heart and all our hearts.

“He goes up and down: his little mind has taken in an awful lot.

image (5)

“As I say this, it’s like I’m talking about someone else, like I read it in a book. When the reality of it hits me, I cannot function. I’m broken-hearted. I’m crying. It’s so painful that’s she gone. She’s left a hole in my life … an empty hole that will never be filled. The pain I’m going through now is nothing compared to what she went through, though.

I want people to know that a pair of lungs would have saved her. If there was a healthier appetite for organ donation in Ireland, less people would die needlessly. I’m asking people to think of the pain and suffering of people when they are saying goodbye to a loved one. Think of the pain and suffering that they’re in but don’t have to be.
Being on the organ donation waiting list was like dangling a carrot in front of Helen, but she was never going to catch it. It was the call that never came.

“I want to share our grief to help other people. There are four side rooms in St. Paul’s ward (in Beaumont Hospital). The day Helen died must have been absolute hell for the other CF patients. They must have thought ‘this is what’s ahead of me’. I’m doing this for them.”

Organ donation

A spokesperson for the Irish Kidney Association told TheJournal.ie that Christmas is an opportune time for people to talk about organ donation.

It’s a powerful legacy to leave your family. It’s a powerful legacy to leave society at large. Organ donation doesn’t just help the recipient. It has a ripple effect in society. Children and grandchildren get to enjoy their parents and grandparents and vice versa. Society gets to enjoy the successes of the transplant recipient because they got the gift of life. In some ways it’s the ultimate gift: the gift of a second opportunity.

Mick, Helen’s partner, said he wants to encourage everyone to consider becoming an organ donor.

From tomorrow, Wales will introduce an opt-out system for organ donation. Mick wants the same thing to happen here.

“I would have no bad feeling if people don’t want to be an organ donor, it’s up to the person – they should be able to opt out,” he said.

“Helen was just a fantastic person, she was an unbelievable person. I know everyone says that about people when they die, but there wasn’t a bad bone in her body.

“It was such a tribute to Helen that when she died every single nurse on the ward cried, nurses came in that weren’t on duty. Everyone from the cleaning lady to the tea lady were upset. She touched so many people. She was so nice and so kind. Helen packed so much into her life, she travelled the world. She never let the disease hold her back.

“We knew we were running out of time but we didn’t think we had less than a week. Helen was delighted with [last week's] article – it got such a positive response … Her decline was absolutely shocking, the doctors don’t know what happened. The day before she got really bad I spoke to her, I got to say what I had to say to her.

She wouldn’t want her fight to be in vain. She didn’t get lungs but we’ll make sure that other people get them because of her. We’re going to set up the Helen Taylor memorial fund to help other families in situations like this … It will be her legacy.

“No family should ever have to go through this again. No little boy should lose his mammy at six years old … She’s taken a bit of a heart with her.”

Want to become an organ donor? Here’s how:

You can download the app or request a card on the Irish Kidney Foundation’s website.

Alternatively, email donor@ika.ie; free-text DONOR to 50050; call 1890 543639 or write to: Freepost, Donor House, Irish Kidney Association, Park West, Dublin 12.

More information about Cystic Fibrosis is available here.

First published Sunday, 30 November

‘Luke’s Christmas wish is that his mammy gets new lungs’

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68 Comments
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    Mute mickt85
    Favourite mickt85
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    Nov 30th 2014, 9:11 PM

    Helen was my beautiful, brave and inspirational partner. She fought for 1 year to get those lungs!!!!!!! You have taken a piece of my heart with you but you have given me the most perfect little boy anyone could ask for and have made me such a better person. I love you so much and if it’s the last thing I do I will make sure no family goes through what we have been through,ever again ,in your memory!!!! Please guys carry an organ donor card but make sure you have the conversation with your family, this is the most important part!!!!!!! Gone but NEVER forgotten… RIP

    2235
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    Mute Sam Bartell
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    Nov 30th 2014, 9:18 PM

    My sincere condolences to you and your son, such a hard loss. I carry a donor card and my family know my wishes. Its a difficult conversation to have but it could save a life

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    Mute fuve
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    Nov 30th 2014, 9:22 PM

    God bless you Mick and your beautiful son. Deepest condolences on loss of your lovely wife. Love and hugs from a stranger x

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    Mute jenni
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    Nov 30th 2014, 9:38 PM

    My deepest condolences Mick. I don’t have many words, but one thing you can take comfort in is Helen will be watching you from above. God bless

    306
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    Mute Trish O'Leary-Dunne
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    Nov 30th 2014, 10:03 PM

    Im so sorry for your loss.you and your family are amazing for speaking out so openly.lets hope the message gets out there.

    275
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    Mute Jennifer Kelly
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    Nov 30th 2014, 10:18 PM

    My heart goes out to you and Helen’s family at this sad time. I watched my father pass of COPD 4 years ago and from that moment on have carried a donor card and had my driving licence amended to reflect my wishes to donate any viable organs. RIP Helen. xx

    218
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    Mute Mary Lyons
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    Nov 30th 2014, 10:24 PM

    Mick you are the lucky one to have been loved by such a wonderful woman and to be Father of little Luke.

    Condolences to you and extended family. Cannot begin to imagine how you will deal with your loss except to say that you will always have Luke as a reminder of the wonderful Helen.

    Please carry an organ donation card and dont let healthy organs be buried or cremated!

    172
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    Mute thetruth
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    Nov 30th 2014, 10:32 PM

    Sincerest condolences Mick. Do so sorry for your loss

    99
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    Mute Byyys
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    Nov 30th 2014, 10:35 PM

    I’m really sorry for your loss.., it brings a tear to my eyes reading this, as I’ve mentioned.. (http://www.thejournal.ie/organ-donation-1789236-Nov2014/) I agree 100% people really need to think about donating organs if anything was to happen,you never know who it could help. all the best Mick.

    111
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    Mute Helen Farrell
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    Nov 30th 2014, 11:12 PM

    Oh Mick my heart goes out to you and little Luke, and Helen’s family. I read Helen’s story last week and I was hoping she’d get the breakthrough she needed. She sounded so strong and determined. I too have one son, age 6. Mind yourself in the months ahead.

    91
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    Mute Stephanie O'Loughlin
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    Nov 30th 2014, 11:59 PM

    My deepest deepest condolences to you, Luke and your extended family. There are no words to describe the terrible loss you have suffered.
    We lost a son (to SUDC) almost 4 years ago and have a fair idea how you may be feeling at this time.
    I am so very sad that Luke has to grow up without his mammy. It just is not right or fair. No little boy should have to deal with this at his age and Helen should have gotten to see him reach all the milestone still ahead.
    I wish you all the strength you need to help him through the next days, weeks and months whilst trying to deal with your own loss also.
    That raw pain we felt at the start has lessened with time…The MISS however will never ever go away.
    I honestly mean when I say that my thoughts are with you all as you face into your new reality. Be kind to yourselves…
    Rest in Peace, Helen and watch over your boys.
    Much love and warmest regards…Xxx

    93
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    Mute Mary Carmel
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    Dec 1st 2014, 3:05 AM

    As the saying goes “don’t take your organs to heaven, heaven knows they are needed here”.

    48
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    Mute fuve
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    Nov 30th 2014, 8:36 PM

    So sad. Rest in peace god bless her family and her little angel. Prayers and love with them x

    512
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    Mute John Collins
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    Nov 30th 2014, 8:34 PM

    That last photo of her is so sad.

    413
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    Mute mickt85
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    Nov 30th 2014, 9:08 PM

    Helen was my beautiful, brave and inspirational partner. She fought for 1 year to get those lungs!!!!!!! You have taken a piece of my heart with you but you have given me the most perfect little boy anyone could ask for. I love you so much and if it’s the last thing I do I will make sure no family goes through what we have been through,ever again ,in your memory!!!! Please guys carry an organ donor card but make sure you have the conversation with your family, this is the most important part!!!!!!! Gone but NEVER forgotten… RIP

    377
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    Mute Claire Tunissen
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    Dec 1st 2014, 8:30 AM

    Mick I know how you are feeling. My sincere condolences to you, your son and Helen’s family for your loss. My husband died in October from a disease called Idiopathic Pulmonary Fibrosis. He too was on the lung transplant list. He got a chest infection and became very ill very quickly as he had no resistance to fight the bacterium. Like Helen he fought incredibly hard to stay fit, to keep walking despite the difficulties and to maintain his weight. Organ donation is the only way forward and it needs to be an ‘opt out’ system. And dare I say it, people should be capable of being assessed for transplant long before they reach a critical stage that if they get an infection, it overwhelms their system. ILFA Ireland (the charity which supports patients with IPF and their families and carers through advice and advocacy) was part of an EU initiative to adopt an EU IPF Patient Charter. You can sign it at http://www.ipfworldweek.org

    29
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    Mute orla redmond
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    Nov 30th 2014, 8:36 PM

    Pity there isn’t a national database available where people wishing to be organ donors can sign up. Their wishes will be known especially if time is of the essence. Anyone that wants my bits when im gone can have them.

    350
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    Mute Catherine Mayock
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    Nov 30th 2014, 9:08 PM

    Insensitive orla. Nows not for frivolity.

    22
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    Mute Rob Cahill
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    Dec 1st 2014, 12:06 PM

    You can just sign up on the back of your driving licence.

    4
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    Mute Lily
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    Nov 30th 2014, 8:36 PM

    Heartbreaking, so sad.

    R.I.P

    287
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    Mute Ronan McCann
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    Nov 30th 2014, 8:42 PM

    Please, please talk to your loved ones about organ donation. It really is the gift that keeps giving. R.I.P. Helen.

    282
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    Mute texas ranger
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    Nov 30th 2014, 8:47 PM

    Jeez. This is one of the saddest stories I’ve read in a long time. RIP lovely lady and may your family get the strength to carry on.

    272
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    Mute Sinead Hanley
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    Nov 30th 2014, 10:35 PM

    God help you all in your grief. I am just lost for words really. She sounds like the best Mammy, wife, daughter in the world. Its not fair at all.

    101
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    Mute Kerry Blake
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    Nov 30th 2014, 8:41 PM

    I joined in for organ donation it’s on my driving license now. Before that it I carried the card. All who can should say they are willing to donate in the event of their death and maybe prevent someone else going through what their family may be going through. RIP Helen and peace to your family at this time.

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    Mute Neasa Ozenbrook
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    Nov 30th 2014, 8:53 PM

    Good it’s on the licence sorry didn’t see this comment before I posted.

    121
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    Mute fergal ohagan
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    Nov 30th 2014, 8:37 PM

    R.I.P.

    263
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    Mute Catherine Mayock
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    Nov 30th 2014, 9:03 PM

    When I have come to the end of the road,
    And the sun has set for me.
    I want no rites in a gloom filled room,
    Why cry for a soul set free.
    Miss me a little,but not too long,
    And not with your head bowed low.
    Remember the love that we have shared,
    Miss me, but let me go.
    For this is a journey we all must take,
    And each must go alone.
    Its all part of the masters plan,
    A step on the road to home.
    When your lonely and sick of heart,
    Go to the family you know.
    And bury your sorrow in doing good things,
    Miss me.but let me go…..

    When I lost someone to suicide, this little peom gave me comfort, and I am not a religious person. Its just a lovely verse of c omfirt. May you rest in peace

    217
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    Mute Sinéad Mac Mahon
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    Nov 30th 2014, 9:14 PM

    Beautiful poem. Thanks for sharing it.

    101
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    Mute thetruth
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    Nov 30th 2014, 8:42 PM

    We need an opt out system in Ireland now

    181
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    Mute Joan Featherstone
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    Nov 30th 2014, 8:47 PM

    Oh no that’s so sad….awful to lose someone so young and at this time of year too (know that one). May she rest in peace, poor little kid, missing his mum at Christmas now and forever after.

    174
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    Mute Lynda Strange
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    Nov 30th 2014, 8:40 PM

    r.i.p you are in my prayers

    148
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    Mute Sophie Redmond
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    Nov 30th 2014, 10:38 PM

    Helen was my amazingly brave cousin. She is such a big inspiration to me and I am sure to many others. She fought so hard for new lungs and suffered so much. Her son Luke is an amazing kid and reminds me so much of Helen. I will do everything I can to be there for him and the rest of my family. Please get an organ donation card and save a life.

    133
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    Mute John Deane
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    Nov 30th 2014, 8:46 PM

    So sad. Condolences to her family and friends. R.I.P

    125
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    Mute Elaine Sweeney
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    Nov 30th 2014, 8:57 PM

    I heard that lady, her mum, on Matt Cooper a few weeks ago – such a sad end to her story. RIP

    121
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    Mute jenni
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    Nov 30th 2014, 8:52 PM

    This is a story no mother should ever have to tell. RIP Helen, you were so brave. Luke will be so proud of his mummy.

    Anyone who has the old style drivers licence… Should tick the boxes for organ donation, I don’t know what the new version looks like.

    119
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    Mute Neasa Ozenbrook
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    Nov 30th 2014, 8:52 PM

    RIP Helen, very sad for all the family. I am an organ donor. When getting your new driving licence there is a box you can tick to say if you are an organ donor, I haven’t received my new licence yet, but I hope it clearly marked on it that I am a donor. If more people could think about it and make the decision when filing in their licence renewal form wouldn’t it be great to give others a chance at life.

    119
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    Mute Michael Reilly
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    Nov 30th 2014, 11:09 PM

    Organ donor is not on the new driving licence. I had it on my old one

    31
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    Mute Colin White
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    Dec 1st 2014, 2:56 PM

    There is a question about organ donation on the application form for the new licence and if you say ‘yes’ you get code 115 put on the back of your licence.

    4
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    Mute MISSChanandlerBong
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    Nov 30th 2014, 9:08 PM

    It’s so sad. There is the card, there is the opt-in on my husbands drivers license, but because of the way the law is here in Ireland I would still be approached if he died and vice versa, even though we have already communicated to each other our willingness to donate after death. I feel a national opt-out scheme would be a wonderful idea.

    74
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    Mute Dermot Stapleton
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    Nov 30th 2014, 9:09 PM

    This is so sad. You can set an emergency section on iPhones so it shows your an organ donor on your password menu.

    68
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    Mute Craig Barry
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    Nov 30th 2014, 9:04 PM

    Very sad – RIP Helen

    65
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    Mute TheLoneHurler
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    Nov 30th 2014, 9:24 PM

    RIP. What a very sad read. The opt-out system should have been introduced years ago.

    62
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    Mute David Boxer
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    Nov 30th 2014, 10:48 PM

    I can’t understand why with the technology and wisdom we have that passed generations didn’t have, we don’t have a system where if somebody dies and they have useful organs to make people continue to live from said organs, why isn’t it mandatory to use those organs ? It’s 2014 ffs

    In a battlefield the medic is instructed to take from all mortally wounded enlisted solders to save the lives of other solders, without regret or debate.

    Common sense.

    31
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    Mute Stephen Mccartney
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    Nov 30th 2014, 9:21 PM

    So so sad… Gone too soon from this world… Big Huge hug for the little fella…xx

    58
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    Mute Stephanie Rogers
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    Nov 30th 2014, 9:19 PM

    So sad :( rest in peace Helen xx

    56
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    Mute Susan O Shea
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    Nov 30th 2014, 9:52 PM

    Seriously why would anyone red thumb someone passing on their condolences

    51
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    Mute April May June
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    Nov 30th 2014, 9:42 PM

    Rest in peace Helen my deepest and sincere condolences for this families loss Helen was and will be remembered as an amazingly courageous women and her legacy will live on through her family and the many life’s of people she touched.

    47
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    Mute Mary Lyons
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    Nov 30th 2014, 9:36 PM

    What a sad sad story. We definitely need an opt out system and also to make sure the box for organ donation is ticked on your driving licence.

    When you consider all the healthy organs that are buried or cremated it feels like such a waste.

    Imagine if someone you loved was accidentally killed or took their own lives, the legacy they would leave if their organs saved or enhanced a number of peoples lives.

    It would make their loss so much less fruitless.

    My organs would not be worth much but maybe yours would be!!

    47
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    Mute Grumpeee Oldman
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    Nov 30th 2014, 10:11 PM

    Indeed.Opt Out system is what it’s required.Not Opt In.

    35
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    Mute Mike Clinton
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    Nov 30th 2014, 10:08 PM

    May Helen rest in peace and my most sincere condolences to those left behind.

    37
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    Mute Geraldine Graydon
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    Nov 30th 2014, 10:10 PM

    Hi Fran Sorry sorry to read about Helen, you and your family are in our thoughts and prayers at this sad time Geraldine & family

    32
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    Mute Anita Nic Amhlaoidh
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    Nov 30th 2014, 10:39 PM

    Ar dheis Dé go mbeidh sí. Very saddened to hear that Helen has died. Sincerest condolences to her family. So very sad for her son and to read of her bravery in waiting all night so she could tell him of her love. Beautiful and so tragic.
    There is no need to take your organs with you. Heaven knows they are needed on earth…

    32
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    Mute Maria
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    Nov 30th 2014, 10:23 PM

    So sad, RIP Helen.

    I’m still trying to figure out why more people aren’t organ donors. Sorry folks, what’s the point in burying perfectly healthy organs in the ground when you die when they could be used to help loads of people. My husband knows my wishes as does my mother and my sister – everything is signed…and they can have EVERYTHING, I won’t need them anymore.

    31
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    Mute Dave Byrne
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    Nov 30th 2014, 11:26 PM

    Have had 2 friends who died in their 30s and vital organs past on, Myself I donate platelets and when I go someone else will hopefully have another go at life with my organs.

    30
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    Mute Daniel R
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    Nov 30th 2014, 9:58 PM

    Heartbreaking. My thoughts are with her family to help them get through this loss
    She’s watching and smiling from above.

    28
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    Mute Alison Byrne
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    Nov 30th 2014, 10:43 PM

    Poor girl, so very sad RIP

    24
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    Mute Gráinne Fallon
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    Nov 30th 2014, 10:56 PM

    So sorry for your terrible loss .
    Thoughts are you you xxx

    24
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    Mute ted hagan
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    Dec 1st 2014, 12:23 AM

    That really is a heartbreaking story. Deepest sympathy to all the family.
    Does anyone who runs Journal.ie ever think of getting rid of the thumbs down on the site? There’s not really a need for it surely. Why encourage heartless, immature fools?

    23
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    Mute Denise Geary
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    Nov 30th 2014, 10:37 PM

    RIP Helen so very sad , my condolences to her family

    22
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    Mute Enda Elvery
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    Dec 1st 2014, 9:13 AM

    I am here today because of my donor.
    Every day I think of what the family did for me.

    17
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    Mute Ailish Curran
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    Nov 30th 2014, 11:30 PM

    RIP Helen. Big hugs to ur son ur partner mick and family. I carry a donor card… xxx

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    Mute rod
    Favourite rod
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    Dec 1st 2014, 12:24 AM

    God what a sad story . The poor family :-(

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    Mute billy dunne
    Favourite billy dunne
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    Nov 30th 2014, 11:34 PM

    Should all carry a donor card organs are no use to you when you are dead

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    Mute Paul Lane
    Favourite Paul Lane
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    Dec 1st 2014, 2:31 AM

    Heart breaking, poor little Luke. But his mammy was very brave and loving and he has a great dad and family. Soo sorry for your loss

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    Mute Patrick Cunningham
    Favourite Patrick Cunningham
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    Dec 1st 2014, 7:57 AM

    My sincere sympathies with this young mother. I do ask God why ? Not found that answer yet.
    May she now rest in peace from the awful condition she had suffered from. To her family again my sadness at this story.

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    Mute Martin Byrne
    Favourite Martin Byrne
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    Dec 1st 2014, 8:59 AM

    People will discuss donation more as a result of what these people have done. Rest in peace brave woman and my condolences to your amazing family.

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    Mute Sheila Bedford
    Favourite Sheila Bedford
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    Dec 1st 2014, 9:13 AM

    RIP helen my thoughts are with you all especially
    little luke no child should lose his mother especially
    at christmas so very sad i carry a donor card

    7
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    Mute Breda Doyle
    Favourite Breda Doyle
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    Dec 1st 2014, 11:47 PM

    Rest in peace Helen you were a beautiful woman..your son will be well looked after xxxxxx

    2
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