The gift of Love

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

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