Monday 20 November 2017

'Isn't it incredible that this may not have happened if it weren't for fans' - How sport helped bring hope to heartbroken families

Aoibheann (inset) passed away in 2009. Aoibheann and her father Jimmy's charity, Aoibheann's Pink Tie, will remember all cancer victims at Croke Park
Aoibheann (inset) passed away in 2009. Aoibheann and her father Jimmy's charity, Aoibheann's Pink Tie, will remember all cancer victims at Croke Park
Ger Keville

Ger Keville

Fight Like A Child. It's a fitting slogan.

You might see these words emblazoned on flags in sports grounds around the country. It was there in Croke Park on the first Sunday in September when Galway powered their way to a first All Ireland victory in 29 years with victory over Waterford.

When Ireland play Moldova next month in a crunch qualifier for the World Cup in Russia next year, fans behind the goal in the South Stand will hold these words close to their hearts.

And it will on the hallowed Croke Park turf when 82,000 people cram in GAA HQ on Sunday when 32 kids will act as special flag bearers. They will wear bands on their wrists in memory of young Semi Brennan who passed away last week. He was just four years old.

Maybe some day we will see Lionel Messi bring the message to a worldwide audience. That's the plan anyway.

Jimmy Norman has spent his life watching his sporting heroes fight in their respective arenas, from Paul McGrath in the Giants Stadium to the Brogans in Croke Park and Katie Taylor in London.

Jimmy Norman at the All Ireland final with Dublin Lord Mayor Mícheál MacDonncha
Jimmy Norman at the All Ireland final with Dublin Lord Mayor Mícheál MacDonncha

Eight years ago, he held his dear daughter Aoibheann's hand as she bravely lost her fight for life.

Jimmy takes a deep breath before he describes those last few, precious moments. 

"As she slipped away, myself and Anne Marie held her and she said to me. She said to me, near the very end, she says 'daddy, am I going to die', and I said 'don't be silly Aoibheann. Don't be talking like that, we have loads of things to do. We are going to go kids go today'.

"She said to me 'no daddy, I am too tired'. That was the last thing she ever said to me. I will say one thing about it, there is some comfort in the fact it was very gentle."

Aoibheann's Pink Tie was born following her tragic passing. 

Eight years on the pain is still evident for Jimmy but those years have also changed the lives of hundreds of children and their families and transcended cancer treatment for the most vulnerable in Ireland.

Jimmy Norman is pictured here with Aoibheann before she got ill and his son Sean. Photo: Ciara Wilkinson
Jimmy Norman is pictured here with Aoibheann before she got ill and his son Sean. Photo: Ciara Wilkinson

Jimmy's passion for sport has helped grow Aoibheann's Pink Tie into a multi-million euro charity. Their road map is clear - bring practical support to children suffering with cancer throughout Ireland by incorporating simple, innovative ideas into their day-to-day lives.  

"Sport is huge for us and I think that's down to the fact that myself and my close mates are sports mad and that energy crosses over to Aoibheann's Pink Tie," says Jimmy.

Aoibheann's Pink Tie has been instrumental in alleviating the physical and mental pain all children go through when suffering with cancer. 

Children are no longer alone when they are going through chemo treatment, they now have their own Chemo Duck who is alongside them. They are no longer scared to sleep in their own room, they have their own thoughts transformed into a mural on their bedroom walls. If mam or dad are not by their side before they go asleep, thy can talk to them with Dream with Aoibheann Pillows.

Paul McGrath has been a huge supporter of Aoibheann's Pink Tie
Paul McGrath has been a huge supporter of Aoibheann's Pink Tie

And then there is the Hickman Dry Suit.

As recently as two years ago, a child with cancer in this country could not go swimming. A group of Ireland fans helped change that and brought profound joy to the lives of 17 brave little fighters and their families.

A central venous catheter called a Hickman line goes into a child's chest to administer chemotherapy and other medications. If the line is penetrated in any way, the artery could become infected and may result in death.

"One of the most emotional things for me ever was when we received a cheque from YBIG (Ireland fans' group YouBoysInGreen). They were the first to come on board with us and raise money for the charity every year," recalls Jimmy.

"We found out about the Hickman Dry Suit and we approached Chris Hammond who invented the drysuit. It allows the child to swim because it is completely sealed and they are individually tailored to each child, that's why they are so expensive. 

"For years we were raffling them once a month because at the time we were not in a position to buy one for every child that asks us for them.

Aoibheann featured in the YBIG fanzine
Aoibheann featured in the YBIG fanzine

"When YBIG came back to us with the €5,000 that was raised, I discussed it with the guys and we decided the best way to spend it was to show the fans something really tangible and make them realise that what they were doing was really life-changing."

Life-changing it was. Here are just some of the comments from the families when they found out their child could once again go swimming.

Wow that is fantastic! Thank you so much to YBIG and APT - it will make such a difference - the summer will no longer be a dread of beaches and jumping in waves etc which is so difficult when you are trying to juggle the normal lives of other children and also include our little ones with Hickman lines - it means they will no longer feel excluded and different - Thank you so much x Mary

OMG NIamh will burst with excitement when I tell her she can go swimming again. She's only 4.5 and asks at least once a week can she go swimming. Thank you APT xxx

ah thats just fantastic news congratulations to all the winners i hope your princesses an heros enjoy every minute of splashing around in a pool as every child should . aoibheanns pink tie yet again you have out done yourselves good on ya

Wow Jimmy this is fantastic news.. Thank you so much!!! Roisin is super excited here. We can't wait to go swimming!!! Thank you to all at APT. This will make such a difference.

Seventeen drysuits were purchased, a relatively small number that made an unquantifiable difference. Jimmy is acutely aware of what the gesture means to families who have to suffer not seeing their child swim.

"We brought Aoibheann to Kerry, two families, Mick Rochford and his kids. We were at a swimming pool and I always remember Aoibheann sitting beside me at the pool and not being able to go into the water and watching the other siblings all having great fun. I could see the sadness in her face but she wouldn't show it.  

"But I knew (she was sad) because the year before in Los Angeles with me and she was jumping off diving boards, she loved the water. It was so sad to watch Aoibheann not being able to go swimming.

A Chemo Duck wearing a Hickman Dry Suit
A Chemo Duck wearing a Hickman Dry Suit

"It's actually as painful to remember as remembering her actually passing away.

"We had one little girl called Dempsey, she is an angel now. She was from Belfast and was going to America for special treatment. She would not have been able to swim but we sent her a dry suit and we have fantastic pictures of her floating around a pool in Florida.

"If I could go back with Aoibheann and do one thing, it would be give her a Hickman Dry Suit. That is the one thing I wish I could have done at the time."

Jimmy's pain makes it even more profound when he hears first-hand how his work has changed the lives of families, from those he has got to know on a personal level to those he has never even met.

"I had one of the most heart-rendering phone calls from a grandmother in England last week who asked about a Hickman Dry suit for her grandson who was diagnosed with a tumour at three years of age. 

"He couldn't go into this hydrotherapy pool which would make life a lot easier for him because of joint pains and she asked if there was any possibility Aoibheann's Pink Tie could provide her with a dry suit. 

"I said we would be delighted to and to hear that woman crying on the phone was something to behold and she said 'you have restored my faith in humanity'. I thought to myself 'isn't it incredible that that story may not have happened if it were not for sports fans'." 

The healing process following Aoibheann's passing is unimaginable.

It was three years later when Jimmy made his first foray into public speaking when he took centre stage at the YBIG Paul McGrath Golf Classic in Luttrelstown Golf Club.

"One of the most interesting stories was with YBIG and the golf classic with Paul McGrath. YBIG raised 5,000 and it was the first time I spoke publicly and you put me in front of Paul McGrath," recalls Jimmy.

"I always remember, I practised all day in work, I had written the speech and re-written it. I was absolutely so nervous going out. The first thing I had to look down at was Paul McGrath looking up at me. 

"But Paul is so humble, he has absolutely been a huge supporter of Aoibheann's Pink Tie.

"One of my favourite memories ever was when I was putting towels up in the dressing room before an Irish legends charity match and Paul came up to the dressing room and said 'How are ya Jimmy?'. It was a magical moment. 

"For me, personally, as a huge soccer fan, Paul McGrath was the greatest player to ever play for Ireland. He has been selfless and I love his story.

"The footballers, the boxers, the GAA players, they are selfless. They give their time, they are incredible with the children and the children love it.

"Barry Fennell runs Hill 16 Army and he was supportive of a young girl who had cancer. He did so much for her and as a huge Dublin fan I got in touch with Barry. He is like 100 per cent supporter of Aoibheann's Pink Tie now. 

"He has got us signed jerseys, signed boots. He got the Dublin ladies team to wear the pink tie band. He has helped raise thousands through the Dublin ladies team.

"He got the Brogans to wear the Pink Tie band and a lot of the team. Aidan O'Shea wore the band this year for Aoibheann's Pink Tie.

"Something like getting a Dublin player to wear the pink band is not that easy to do but by God does it have a huge impact."

Listening to Jimmy Norman address a room full of people is empowering. He tells Aoibheann's story with such passion and dignity that only a man who has lost someone so close could.

His life is immersed in Aoibheann's Pink Tie. St John's Ward Crumlin. Fundraisers. Sport.

When Jimmy took to the stage in 2012 in front of Paul McGrath he was visibly nervous. Now, he says, he can stand there and deliver a speech without a second thought and  "rip a room apart".

That's why he wants just a few, short minutes with the world's greatest footballer.

"Messi is the real big one. Messi is hugely supportive of childhood cancer, as is Ronaldo," he says.

"I believe that Aoibheann's Pink Tie has found out some of the greatest programmes for children in the world, the Hickman suits, the Chemo Duck, we have a thing called dream with Aoibheann pillows, our support systems, brilliant vinyl murals.

"I think the ideas that Aoibheann's Pink Tie have should be brought to other countries. Spain doesn't know about the Hickman Dry Suit, Spain doesn't know about the Chemo Duck. 

"Lionel Messi could make so many kids' lives better by creating awareness. If I could meet him, I could show him what we do. We don't want donations, just a photograph introducing the Hickman Dry Suit, the Chemo Duck. Bring them to your colleagues in Spain and they will be blown away by them."

Messi must wait his turn for now.

First up for Jimmy is his beloved Dublin in the All Ireland final against Mayo. He will be there, as will Aoibheann. On flags, on his wrist and very close to his heart.

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