Sunday 15 September 2019

The gift of love: Colin Farrell, The Edge, Laura Whitmore and more, on childhood illness

With so little money going towards childhood illness research and care, Constance Harris admires these stars of stage and screen who are supporting sick children and their families in raising vital funds and awareness this Christmas

Colin Farrell. Photo: Emily Quinn
Colin Farrell. Photo: Emily Quinn
Andrea Corr. Photo: Emily Quinn
Domhnall Gleeson. Photo: Emily Quinn
Laura Whitmore. Photo: Emily Quinn
Victoria Smurfit. Photo: Emily Quinn

What is the magic ingredient that makes a person famous?

I am tempted to attribute creativity and fame to having one's tonsils out and eating jelly and ice cream afterwards, as that's what Colin Farrell, Johnny Sexton, Victoria Smurfit and Domhnall Gleeson all have in common.

They also have in common hard work and dedication to their fields of speciality. And not resting on their laurels, but generously giving their time in taking part in a new, hugely important fundraising campaign, to raise life-saving, life-enhancing funds for sick children through the Children's Medical and Research Foundation, Crumlin (CMRF Crumlin), this Christmas. Though they missed out on the tonsils-op pleasure, The Edge, Andrea Corr and Laura Whitmore are standing with the others in supporting the campaign.

It's called Childhood Illness Takes Too Much #WhateverItTakes ­- and it kicks off this week. They need us to support them in doing whatever it takes to help sick children and their families.

CMRF Crumlin is the charity fundraising body for Our Lady's Children's Hospital Crumlin and the National Children's Research Centre. Last year, CMRF Crumlin raised over €11.9m, which went directly to the research of children's illnesses, as well as to improving the quality of the lives of the children who find themselves in hospital. This year, they have put the pressure on, and hope to raise €12.5m to meet planned expenditure that will ramp up paediatric research, purchase life-saving equipment and put more support in place for sick children and their families.

Childhood Illness Takes Too Much #WhateverItTakes is the brainchild of long-standing CMRF Crumlin supporter, fashion photographer Emily Quinn, and CMRF Crumlin CEO, Lisa-Nicole Dunne. The campaign features some of our favourite exports photographed by Emily, with a favourite toy from their childhood. Or something that they felt was important to their childhood, and to the person they went on to become.

The message from the celebrities featured is clear: we survived childhood; we got to play and explore, and look what we did. Let's give sick children a chance at having a future.

For The Edge, it was a toy guitar. For Johnny, it was school and education, as there he got to play sport and find creativity. As he explains it - he got to school, he got a future. He feels for sick children who miss out on school and play life, and may well miss out on that creativity.

For some of our national treasures, saying 'yes' to Childhood Illness Takes Too Much #WhateverItTakes, was personal, born of experience. Colin Farrell was in hospital as a child, having his tonsils out, and he vividly remembers feeling scared and lonely when his mum had to leave at the end of visiting hours. As an adult, he has first-hand experience of the draining worry and stress of having a child with special needs, as his first-born son, James, has Angelman syndrome, a rare genetic condition.

"As a parent, you will do whatever it takes to make your child better, and you want to know that you have the best people around you, giving the best care, best knowledge, and best treatments," says Colin.

"Some children are born fighting for their first breaths, and others fight all through their lives. Imagine not being able to breathe, or holding your tiny baby while they fight for every breath?" says Colin. "New innovations in cardiology and cystic fibrosis can literally be life-changing for children, and we need to make that possible. We need to find answers for these children. I'm in. Whatever it takes."

Natural instinct

Victoria Smurfit, too, has first-hand experience, as a mother, of living a life that revolves around hospitals for the care and future of the most precious being in her life - her daughter, Evie, who has Stargardt disease.

"When your own kid is sick, the feeling of being out of control is very difficult. It's really hard, because your natural instinct as a parent is to protect your kids, and not being able to do this is hard," says Victoria. "You place your trust in, thankfully, very capable hands, but stepping back and not being the boss is tremendously hard. Any time I've been in need of our great hospitals, I've been overwhelmed by how much they do, and how much they need our support to continue the essential work they do. The spirit of Crumlin is so positive and upbeat in the face of such potential and real pain. The only time a parent is truly vulnerable and pained is when their child is struggling.

"The best bit of advice I have for parents is to never let their kid see their worry. Kids take their cues from us. Go cry in the bathroom, keep the smile in place in the ward, and ask questions. Be, on some level, part of the fix. But then let the professionals work their magic. Stay positive!"

When you consider that half of the population of Ireland is either directly or indirectly affected by childhood illness, it is shocking to learn that less than three per cent of research funding in Ireland goes into paediatric research.

"It is nowhere near enough to make any headway," says Lisa-Nicole. "More focus needs to be given to childhood illness research.

"With #WhateverItTakes, we are asking for public support to help discover gentler treatments and improve outcomes for children and, some day, cures for childhood cancer and other illnesses."

This year is the 60th anniversary of the discovery of Burkitt lymphoma. Today, thanks to research, the overall cure rate for Burkitt's lymphoma is 90pc in developed countries. "CMRF Crumlin is committed to striving for cures for 100pc of children, and to extending this success rates to other types of childhood cancers, including neuroblastoma, leukaemia and lymphoma," says Lisa-Nicole.

And while the cure of an illness is always a relief, that doesn't mean a child is then good for the rest of their life. There can be consequences from their treatment, as well as their illnesses, that will need ongoing support. CMRF Crumlin is there for them. It is wholeheartedly about life, living, futures.

What CMRF Crumlin does and supports can be anything and everything - from hospital equipment to facilities for parents who find themselves suddenly living in the hospital with their children; to learning support to make up for missed time at school; to giving a child or teenager some semblance of normal life while in hospital, such as a PlayStation.

One-hundred-and-eighty-five children will go to sleep in Crumlin Children's Hospital each night; one child in 100 is born with a structural heart defect; 211 children are diagnosed with cancer each year; one baby in 16 is born before 37 weeks, and is thus premature; one person in 19 carries the cystic fibrosis gene.

Numbers. Numbers of new beings living already challenging lives. For each one, there are multiple people feeling fear, anguish, hope and resolution - family members, friends, healthcare staff.

"The greatest gift we can give our children is the gift of love," says Colin for the campaign. "Within that gift, is another gift that I think is essential - the gift of acceptance, through allowing a child the trials and errors of figuring out who they are, who they wish to be. I think if a child can learn independence, that will serve them all their days."

Childhood illness does take too much. Let's give them a fighting, love-filled chance.

#WhateverItTakes

THE EDGE

Parent, musician

Chosen childhood memory item: A toy guitar

"Just holding this rinky-dink Spanish guitar as a kid of 10 allowed me to start to imagine becoming a musician. I had no idea how to tune it, let alone play it, but through it, I caught the guitar-playing bug."

 

JOHNNY SEXTON

Parent, rugby player

A dedicated CRMF campaigner and ambassador, he co-founded, with Ronan O'Gara, The No 10 Fund, the aim of which was to raise funds to build a new six-bed cardiac day unit in Crumlin hospital alongside the Children's Heart Centre. This aim was achieved, meaning that children required shorter visits to hospital and cardiac conditions ccould be treated on a single floor. The No 10 fund was launched in 2015 and has raised a whopping €750,000 to date; the need for cardiac research is ongoing - the No 10 Fund is there for them

Chosen childhood memory item: A school desk

"My favourite part of school was always about being able to play sports, being part of a team, being able to participate and train regularly. For so many children, that is just not possible. If you are not well enough to go to school, you can't go training. If you're in hospital every other week, you can't be there for matches. We need to understand what is hurting sick children so that we can to help them. We need answers for children. We need knowledge to tackle IBD, asthma, allergies, cystic fibrosis, and cancer. We need to do whatever it takes to get children better quicker, and more gently.

"Play and imagination is so important for children, because it helps them communicate and express themselves. Creativity is also good for developmental blocks in children by allowing them to try out new ideas, new ways of thinking, new ways of problem-solving, and it also helps with their self-directive skills and builds confidence.

"We've been really lucky with our kids - touch wood. I've been in and out of Our Lady's in Crumlin as a CMRF Crumlin ambassador, and I've met some of the bravest and most resilient little people you can imagine. We had one really bad experience where our eldest, Luca, had a febrile seizure. They are a scary thing to experience. We felt helpless and vulnerable until we got to Crumlin. Knowing we were surrounded by experts there was comforting, and then when they told us everything was all good, we were relieved. It's also difficult not to assume the worst, and fear that your child has something more serious. For some parents, that's an ongoing reality. We need to find out more about childhood illness. The more we know, the more we can do. Our little people need us to keep fighting for them.

"As a parent, it's difficult watching your usually happy and energetic child become lethargic, and seeing them in pain.

"I got through it by trying to stay calm and stay positive. It's important to have people around you to support you as best they can, like a spouse or a parent. Sometimes, especially when you have other children, it can be difficult balancing things. I obviously have training, so it is not easy to leave them at home sick and it is hard for my wife, who is at home by herself while I am gone."

VICTORIA SMURFIT

Parent, actress

Chosen childhood memory item: Toy stethoscope

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Victoria Smurfit. Photo: Emily Quinn

"I used to make-believe I was a doctor when I was a child. For so many children in Ireland, medicine isn't make-believe. For so many children, childhood illness is a reality, with scans, surgeries and medicines. Any parent with a sick child just wants a return to a world where stethoscopes are things they play with when they're using their imagination, and thinking about what they want to be when they grow up.

"In Ireland, only two per cent of research funding goes to paediatrics. Only two per cent [goes] to finding answers, cures and better treatments for sick children. Childhood illness takes too much, and it's not a fair fight.

"I spent most of my childhood deep in my imagination. I have, in my mind, already played Wonder Woman, Supergirl and Batman. But the real superheroes are our doctors and nurses, who spend their time and their talents on our children. To them, I am eternally grateful."

ANDREA CORR

Parent, musician

Chosen childhood item: "I am holding my beloved Fisher-Price record player. Twinkle Twinkle is ready to play. My children play with it now"

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Andrea Corr. Photo: Emily Quinn

"Childhood illness can keep children away from their home and life too much. As many as 185 children and babies are not at home in their beds tonight. Their illness is keeping them in Our Lady's Children's Hospital in Dublin.

"Some spend weeks and months away from siblings and their own home; away from their toys, from their music. We want to change the record on this. Get them well, get them home, get them out to play, as quickly as possible.

"I don't remember personally the time, as a baby, I spent in hospital. I was admitted for a kidney infection, but I also picked up gastroenteritis, which I became seriously ill with. It was one of those stories I liked to hear a lot as a child. Brown eyes looking out of the cot at [my parents], and the rest of me as white as the sheets.

"My parents were very scared and visited daily, hoping there'd be a change and that they could bring me home - the 'well' baby I had been before I got sick. They visited my uncle and aunt one day, having been in to see me, and couldn't resist popping in again on their way home. They found me [with my] colour [back], smiling out of the cot, and were told they could bring me home, which they did - in my older cousin Shane's boy's brown dungarees and his T-shirt.

"As a mother, I can only imagine the helpless fear parents must feel when their child is ill in hospital. How they must yearn for their home, playing as they should be, with their happy chatter alive in the house. I'd say it's one of the hardest experiences a family can suffer.

"But for it to go on to become a favourite funny story, and the hospital episode within to be one of love and colour, in as much as it can be... That would be what I'd hope for, and what I believe children's hospitals need our support with.

"I think the greatest gift we can give our children is as long of a happy childhood as is possible. To feel loved and safe, even when it is an episode away from home and in hospital."

DOMHNALL GLEESON

Actor

Chosen childhood memory item: A book

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Domhnall Gleeson. Photo: Emily Quinn

"I used to love reading books and disappearing into different worlds. But living in a world where an illness is the main character in their life is a sad reality for so many children in Ireland. We need to do better for them.

"For children, this means treatments, cures, prevention. It means winning the battle against childhood illness. It's not science fiction to believe that we can do better for children.

"Creativity doesn't exist without imagination, and play is a great way to fan those flames. It's also fun, which is important for life, not just creativity.

"I don't have children myself, but everybody - be they child, grown-up, in-between - benefits from love, attention and kindness."

LAURA WHITMORE

Television presenter

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Laura Whitmore. Photo: Emily Quinn
 

Chosen childhood memory item: A chess set

"I used to love the challenge of trying to figure out the next best move to make in a game of chess. Studying the board; studying my opponent. When it comes to childhood illness, the next best move is research. Children experiencing childhood illness are suffering, they're missing out. It's not fair. We need to find answers for them and their parents so they can get on with their lives.

"I can't imagine the stress of having a sick child, and the stress of not having answers or not knowing what to do next. Research can change that because it means more cures, more innovations and more answers.

"Parents, doctors, scientists and all of the people joining the CMRF Crumlin campaign for children are relentless in the pursuit for better. We won't stop until we find more answers and help more families, because childhood illness takes too much. I'm so happy to support the CMRF Christmas campaign, and I hope that it will help raise vital funds for some of Ireland's sickest children.

COLIN FARRELL

Parent, actor

Chosen childhood memory item: A windmill

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Colin Farrell. Photo: Emily Quinn

"The greatest gift we can give our children is the gift of love. Within that gift is another gift that I think is essential - the gift of acceptance, through allowing a child the trials and errors of figuring out who they are, who they wish to be. I think if a child can learn independence, that will serve them all their days.

"I've been so lucky with my health all my life, but I do clearly remember having my tonsils removed. I must have been about seven, and I remember - if you'll excuse the drama - watching my mother walk down the corridor away from me after visiting hours. I remember feeling awfully lonely - and I repeat, I was only having my tonsils removed. I think I was in and out in two or three days.

"I think having a family member there, without visiting-hour constraints, would have made it better for me as a child.

"Having experienced a child of mine being hospitalised and being at the mercy of the hospital staff, I remember my overwhelming gratitude for all the attention my son received. However, the overriding feelings were the expected ones: fear, concern, helplessness and definitely, a very keen sense of focus.

"The presence of love really can - in my experience - pull us through most of life's challenges.

"As a parent, one can feel helpless when faced with a situation where you cannot instantly see your child [progress] into healing or better health. Of course, such sadness and frustration can be a very powerful thing, and result in a darkness of mood, understandably. But I would humbly suggest that if a parent finds themselves caring for a sick child, to keep one eye on taking care of themselves too, whatever form that may take.

"It could be ensuring you get enough rest, a few pints with friends, or a walk on the strand - all in the name of staying as strong as you possibly can, so that your child can have you as present as you may possibly be. I would also say to lean on those you love and trust. Whatever battle you will be feeling inside belongs to you, but sharing it may be some relief. It is at times of such hardship that community, whether family or friends, really plays its part."

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