Temple Street Children's University Hospital - Your Street Newsletter

Summer 2014

A new, stateof-the-art ward – all because of you!

Pictured: Dylan, one of our little patients proudly helps professional cyclist Dan Martin open the new ward.

Thanks to you, our amazing supporters, we were able to completely upgrade the Top Flat Ward at Temple Street. The upgrade cost €2 million, with almost €1.65 million coming from your charitable donations.

What an achievement!

The full story continues inside on page 2.

Top Flat Ward after refurbishment

For the love of BOD

A tribute to Triona

Marathon Achievements

The amazing Izzy

Aimee’s Great Irish Bake

The Race for Grace

Top Flat today!

• Four state-of-the-art isolation suites, each with its own en-suite.

• A satellite classroom for children who are missing out on school.

• A specialist treatment room.

• A consultation room to discuss a child’s prognosis in private.

• A bathroom in every unit.

Thanks to You, We Have a New Top Flat Ward!

Top Flat is one of the busiest wards in the hospital. It’s where children with serious injuries are cared for after A&E, and where children undergoing surgeries go to recover while their anxious parents wait in the wings. It is also a place where children with life-limiting illnesses often call home. Over 1,900 children are admitted to Top Flat every year. Your generosity has made such a difference to the ward, which hadn’t seen any major improvements since the 1930s.

What was once a dilapidated and dark ward has been transformed into a new world class facility with a mix of four – and two-bedded units.

It also contains four single isolation suites, each fitted with an air-pressurised controlled environment. These rooms are essential for children with weak immune systems or those vulnerable to infection, such as Cystic Fibrosis patients. One of the single rooms has also been fitted out to monitor children with uncontrolled epilepsy.

Your donations helped make all of this possible!

• An individual patient entertainment TV and game system.

Our Promise to our supporters All of the money raised by our generous and loyal supporters is used to help sick children and their families. None of our donor’s money goes towards hospital management salaries or allowances. Every single act, every donation and every fundraising event you host or support makes life better for sick kids in Temple street.

Your donations make a huge difference In 2013 we spent over €3,800,000 helping sick children and their families:

Ward & Hospital Redevelopment

54%

€2,086,004

Research

19%

€740,471

Equipment purchases

13%

€497,061

Patient & Parental support services

9%

€337,385

Disbursements direct to wards

4%

€167,849

100%

€3,828,770

Return on Investment For every one €1 invested in fundraising we generate almost €4 for sick kids in Temple Street. Only 16% of our net funds are spent on governance and administration. For a full set of our annual accounts see www.templestreet.ie.

The Race for Grace How a Mother’s Love Changed Lives Marie Duffy’s daughter Grace, who has Cystic Fibrosis, is just one of the patients who will benefit from the refurbished Top Flat ward. While Grace’s diagnosis was a terrible shock to the Duffy family, Marie was determined that her little girl would only ever receive the best possible care.

Grace Duffy was diagnosed with Cystic Fibrosis when she was just two weeks old, on what her mum Marie describes as a “grim day” in November 2011. The diagnosis changed the family’s life forever, with Grace attending Temple Street every week.

“We were taught how to give her medications, how to do her twice-daily physio and give her digestive enzymes and her inhalers. The support we received from Temple Street was amazing. We learned more about the disease and the importance of keeping Grace well and healthy, away from people with coughs and colds. But we also learned that Temple Street didn’t have any isolation rooms with ensuite facilities, which are so crucial to kids with CF.” Christmas was hard that year, says Marie, as the family came to terms with the shock, the grief and the denial. On New Year’s Eve, before the clocks turned 12, she felt a sudden urge to make a difference.

“I just felt helpless and I wanted to do something. I thought if Grace was going to be admitted into Temple Street for an infection she would have an isolation room!”

Marie didn’t wait around. She asked her family, her friends and even friends of friends to make a New Years Resolution to help raise money for an isolation room in Temple Street.

“I asked them to run, walk or crawl the Women’s Mini Marathon with me. I was on a mission to get 65 women to do the marathon. Because children find it difficult to pronounce Cystic Fibrosis, they sometimes call it “65 Roses”.

So I thought if I got 65 women to do it with me it would be quite fitting. Our team would be called Race for Grace.

I had never done a marathon before in my life, I was lucky to walk across the street!

But I headed out every morning with Grace wrapped up in the buggy. She would get her morning sleep and I would listen to my tunes, have a cry if I needed to or simply just reflect on everything that had happened. I actually found my walks very therapeutic and found it really helped me get through Grace’s diagnosis.”

Marie also got the community involved.

She sourced raffle prizes from generous companies and asked her local businesses to sell tickets to their customers.

“This raised lots of awareness for Race for Grace and for Temple Street. Some of the team even got their own businesses involved, organising cake sales and donating spot prizes.”

On the day of the marathon, the Race for Grace team set off proudly in purple Temple Street t-shirts, the sun shining down on them and Grace in their thoughts.

“Coming to the end of the marathon, my husband had brought my girls in to cheer me on, so I took Grace and my 6-yearold daughter with me to the end of the line,” says Marie. “I thought I would be a blubbering mess but instead I found it so rewarding and inspiring.”

In the following days, Marie started to collect all the money raised from the team and the local businesses, and just couldn’t believe how much was coming in.

“Our hard work had really paid off. Team Race for Grace raised a staggering €25,133.40. It was a huge achievement and I was so proud to do it for such a good cause. The money raised went to the refurbishment of one of the busiest wards in Temple Street, Top Flat, but more importantly for us it went towards an isolation suite, specifically designed for children suffering with illnesses such as Cystic Fibrosis.”

“To manage the Team Race for Grace was such a rewarding experience and I could see the results with my own eyes.

Now Grace can go to a safe place. This will add years to her life and prevent her from being exposed to threatening infections.”

‘Busy Izzy’ and the Blue 500 Talking to her mam Emma, within minutes, you get a real sense of the full, exuberant and bright person that Izzy, her amazing daughter obviously is. Izzy sounds older than her years – she just celebrated her 6th birthday on February 22nd – 11 days after serious brain surgery to remove a massive malignant tumour.

And what a few months Izzy and her family have been through. Izzy is now having chemotherapy and radiation.

And despite the painful and upsetting side effects, her positive attitude shines through. Emma explains: “Izzy has been utterly amazing. When Steve and I were stressed talking to the surgeon about the operation, it was Izzy who was asking the rational questions like: ‘How will you get through my hair?’ ‘Are you going to shave my head?’ No matter what treatment or procedure she had to endure, there was no complaining or moaning. Somehow she knew it was all to make her well again. It was as if she was taking care of us”.

Surgery like Izzy’s was made safer and more effective because of a very specialised piece of equipment funded by Temple Street’s wonderful supporters – the Blue 500. Brain Surgeon, John Caird explains that this technology is hugely important.

“The patient drinks a dye and this is taken up into the malignant cells of the brain. In simple terms, when you shine a blue light, the malignant cells glow a fluorescent pink colour. So, it allows us to see the boundaries of the malignant tumour and perform precision surgery. If we didn’t have this, we could be leaving parts of the malignant tumour behind. It really is an important advance in our battle to successfully treat malignant tumours.”

Emma and Steve – and of course their little heroine Izzy – are quite emotional when they describe the care and support they received at Temple Street: ‘Busy Izzy’, the nurses christened her. That tells you how great the friendship was

between them. For us as her parents and family, we feel she couldn’t have gotten better care. Though we went through hell and were glad when she was well enough to leave, we were crying saying goodbye.

We’ll never forget Temple Street.”

The Blue 500 cost Temple Street €50,000.

Rising to the Challenge – Our Wonderful Marathoners Mór Money Raised at Aer Arann Half Marathon

London Calling

The Aer Arann half marathon in aid of Temple Street took place on April 12th this year, on beautiful Inis Mór island.

Over 100 participants jogged, ran and walked the course, which takes in some of the best scenery in the world – a magnificent coastline with spectacular views.

Well done to everyone who ran for Temple Street in the 2014 London Marathon. On April 13th, our fit supporters took on the 26.2 mile course, getting a first-class tour of London’s biggest tourist attractions along the way.

It raised over €50,000 which will help purchase a vital Synthes AO system, which treats orthopaedic trauma in our operating theatres. This event demonstrates the huge impact you can have by helping sick kids one step at a time!

The London Marathon takes place again on the 26th April 2015.

It’s one of the largest annual fundraising events on the planet and a great way to raise funds for Temple Street!

Christmas Raffle A big heartfelt thanks to all of you who sold tickets or bought tickets in our Christmas Raffle. It is one of our most important fundraisers of the year. By supporting it, you’ve delivered, once again, a lovely christmas present for sick children!

A Sad Goodbye to Inspirational Triona Priestly All of us here at Temple Street are so sad to say goodbye to Triona Priestly, an inspirational 15-year-old who lost her battle against Cystic Fibrosis in April. She will be desperately missed by staff and patients at the hospital.

Triona’s rare strain of CF meant that she was a frequent resident of the Top Flat ward and even raised money for its refurbishment. She also fought to raise awareness for the disease, recording many videos about her life and how she coped with being a teenager with CF. She was an inspiration to her many friends as well.

Shortly before her death, they launched a Twitter campaign, #SongForTri, asking Triona’s idol, singer Ed Sheeran, to sing to her. The campaign went viral. Ed rang Triona and sang her favourite song “Little Bird” to her in her last moments.

“We are forever indebted to Ed Sheeran for that, to grant such a wonderful wish to Triona.

It was an amazing moment”

– Triona’s mum Bernie.

“Ed Sheeran sang the whole song and as Triona took her last breaths, he finished the song. I looked down and said ‘I think she’s asleep’. The consultant clipped off the mask from her face and she had a little smile on her face.”

Everyone at the hospital would like to give our sincere condolences to the Priestly family. We will always remember Triona’s happy, beautiful spirit and all that she did to raise awareness for Temple Street and for CF.

An excerpt from a text Triona sent to Play Specialist Julie Collins in May of last year:

Julaaayyy I just found out its ‘thank your nurse day’! You are like a second family to me! I love everybody so much and I appreciate everything they do for me when I’m in! Caring for me and what I talk about! Keeping me company at night when everyone else is asleep! It means the world to me and they’ve no clue! I got upset the other day actually just because I missed them so much! But most importantly (sshhhhh) to you and my CF nurses I would be lost without you when I’m sick!

I understand how much you all truly care about me rather than just having to be my nurse and being paid to care for me haha!

I’ve learnt recently while I’ve been sick that you’re like the only people that understand me! I’m an emotional poo right now hehe but you make hospital ten times better which for that I’m forever grateful and you need to keep this a secret but me and my daddy think you’re an angel! The next time I see you I’ll be all normal and not I LOVE YOU-ish but I was a little bored and you’re all always on my mind!

I’m tired so bye and goodnight and spread the love tomorrow! Thank you for always being here xxxxxxxx

Mothercare Gives Temple Street a €42,000 Infusion Mothercare Ireland presented Temple Street with a cheque for an amazing €42,000 following an 18-month fundraising campaign. Staff from Mothercare’s head office and its 22 stores took part in a host of activities to raise the much-needed funds.

One of the bravest patients we know, 11 year-old Aimee Louise Fenton goes to two schools. One is where she lives in Midleton, Co Cork. The other one is in Dublin. Aimee has had to spend so much time in hospital, it’s like a home from home. And despite the challenge of weekly dialysis treatment, Aimee and her parents don’t want her to miss out on school. The one-to-one tuition is just one of the many non-medical but vital supports that kind donations help fund here in Temple Street.

Aimee was born with Polycystic Kidney disease, which can be fatal for babies but her dad Donal stepped up to the plate and donated his kidney giving his brave little girl the gift of life, a life which she embraced wholly. She grew strong and tall and developed a love for swimming, dancing and music (especially 1Direction)!

Much to Aimee’s family’s devastation in December 2011 she went into kidney failure. Now they’re waiting to find a new

They ran the Women’s Mini Marathon, worked on the Drive to Save Lives car safety campaign and organised dozens of bake sales and coffee mornings.

We are so grateful for their hard work and the money they raised will be used to buy eight infusion pumps for our St Michael’s B ward. This essential equipment is used to treat Temple Street’s youngest neonatal patients by infusing drugs, IV fluids and total parent nutrition.

“Working with Temple Street Children’s University Hospital has been a real eyeopener,” says Laura Ward, Mothercare Marketing Director. “We work with parents from the early stage of pregnancy, offering advice and sharing in their excitement but unfortunately, many families end up in need of the amazing services offered by the talented and caring doctors and nurses in Temple Street. They kept us motivated every little step of the way.”

match. Her dad, Donal says: “Aimee is desperate for a new kidney but she copes much better than we do. She is such a little trooper.”

Her mum Michelle has had to give up her job to ensure life is as normal as it can be.

Aimee’s vital treatment means a trip four days a week to Temple Street for haemodialysis – the only centre in Ireland that can provide this procedure. On those days, their gruelling routine starts at 5am; a 3-hour journey; up to 4 hours on the dialysis machine (tuition time!), recovery, and the long trip back home.

Even in the face of adversity, Aimee and her family are great champions for Temple Street. They participated in the Great Irish Bake this year and raised €2000! “My mam is a great baker so we had a party in the garden for the Great Irish Bake. I can’t eat a lot of the treats myself, but I don’t mind if it’s helping the hospital and all the other sick kids there” says Aimee.

Families, individuals, workplaces and schools all over the country participated in Temple Street’s Great Irish Bake which is kindly supported by EBS. Thousands of favourite pastries, cakes, savoury treats, pies, cupcakes and desserts were created

and sold for a great cause – to pay for critically-needed equipment for premature and new born babies fighting for life.

Specifically, the funds will pay for three state-of-the-art incubators – mobile intensive care stations – fitted with all the key life supports, critical monitors and temperature controls.

Money is still coming in from the Great Irish Bake so if you’ve completed your event, don’t forget to return your amazing funds as soon as you can.

Thank you!

A special thanks to EBS for sponsoring the cost of the Great Irish Bake Appeal.

#ForTheLoveOfBOD! Rugby star Brian O’Driscoll has been a great ambassador, fundraiser and a friend. The kids at Temple Street wanted to say a special thank you for all he has done, as he prepared to line out for Ireland on home turf for the last time.

So, they made him a tribute video entitled For the Love of BOD which was played at the Aviva Stadium on game day and went viral here and in the UK!

“I absolutely loved the Temple Street video – it was the most touching tribute I could have received. I was completely overwhelmed.

Thanks so much to each and every one of the children…and I can confirm the ‘secret to getting good’ is definitely eating lots of broccoli and carrots!”

Pictured: Michaela gets a hug from her idol Brian O’Driscoll

What makes Brian so special?

He’s a champion!

His power, his pace, his speed and his charisma.

I think so, from what I’ve heard from my friend Claire, she’s gone to a lot of his matches, so I think he is!

How did he get so good?

Because he eats vegetables!

What has he done for Temple Street?

After I had my kidney transplant, he came in to visit me and that was very nice of him.

Is he any good at Rugby?

Broccoli and carrots.

He’s the best rugby player I’ve ever seen!

What would you like to say to Brian?

The children… they might find it hard here and it’s really nice that he’s taken time out of his own life to come and visit them all.

Thanks Brian for all the fundraising!

You can watch the video online at: templestreet.ie

2014 – Our Vital Equipment Needs Every year we set ourselves a target to raise €5 million for the hospital and already this year you have been working hard to ensure that we reach our goal. We have a team of highly qualified doctors and nurses who strive to do everything they can for our little patients but they need your help. They need your help to raise over €1.5million to purchase incubators, vital for keeping new born babies alive. They need your help to purchase patient monitors and ECG machines essential for caring for and monitoring our little patients recovering from surgery. And so much more.

A Marathon Effort

Bake, sell, challenge, shave, dress up, entertain or dare! The list is endless.

Running the equivalent of four marathons in two days is a huge undertaking, but solicitor Declan O’Flaherty had the best inspiration in the world – his daughter Muireann. Muireann is three years old. She is unable to walk, talk or feed herself and needs 24-hour monitoring and care.

For more information on our upcoming events, please Call: 01 878 4344 or Email: info@templestreet.ie

Declan and his wife Gina, along with their friends, family and colleagues, wanted to give something back. Their ambitious plan was to raise €100K for Temple Street, as well as the Jack & Jill Foundation and the Brothers of Charity. Declan explains:

Join in on the fundraising fun Whether it’s at work, in school or in your local community, there’s a way to join in on our fundraising fun that’s right for you, and the cash you raise could save a child’s life.

“Disabled children can’t vote, they can’t march on the Dáil, they can’t even lobby their local councillor or mayor. But we, as their families – and also as friends of their families – can make a difference by supporting those who provide services for these amazingly beautiful and courageous children.”

Marathons 4 Muireann was born. Declan would lead a group run from Athlone to Dublin – the equivalent of three marathons – finishing up at our hospital. Declan would then run the Dublin Marathon the very next day!

Declan says that when the going got tough, he would think of Muireann and how lucky he was just to be able to run.

“Running is a gift. My daughter Muireann doesn’t have that gift.

It’s very easy to run long distances when you have that sort of motivation.”

Our supporters are at the heart of everything that we do. Thank-you so much for being there when you were needed most!

Marathons 4 Muireann raised over €60,000 for each charity. What an amazing achievement! You too can make a difference. To organise your own event or take part in one, call or email anytime!

Temple Street Children’s University Hospital, Temple Street, Dublin 1, www.templestreet.ie | info@templestreet.ie | CHY 13534.