The Cystic Fibrosis Research Appeal

 

WILL YOU FUND OUR CUTTING-EDGE SHIELD CF PROGRAMME TO CHANGE THE FACE OF CARE AND TREATMENT FOR CHILDREN WITH LIFE-THREATENING CYSTIC FIBROSIS?

Let me tell you about the Woodwards – a truly remarkable family. They’ve been through the kind of hell no family should have to face and they’ve come out the other side – hopeful, positive, big-hearted. But they are also pragmatic. And demanding for their children’s futures.

Their battle goes on. Two of their three children have Cystic Fibrosis – commonly known as CF – a life-shortening and difficult illness that causes ever-increasing lung damage, severe respiratory problems and harm to other vital organs.

Maybe you already know that Ireland has the highest rate of Cystic Fibrosis in the world. One in nineteen of us carry the gene and one in every 1,400 babies will be born with CF. There is no cure – just intensive treatments and methods to control and alleviate the symptoms.

However, hope is very much alive for the Woodwards and other families living with CF.

    

Our research centre is embarking on an exciting and innovative project. Through our world-unique new research programme ­– SHEILD CF – we are going to find out things about the disease we’ve never known before. And while that’s happening we will feed in the emerging learning as it becomes available, so that we can offer better treatments with no delay, from the earliest weeks and months, to all children with CF in Ireland.

You can play an absolutely pivotal role in this fantastic initiative.

Given what they’ve been up against, you could understand why the Woodwards lives might be defined only by struggle. But within minutes of meeting them, it’s clear that their lives are instead shaped by three gorgeous and unique children; three free forces of nature; three loved and loving, full ‘characters’.

Three little amigos. Emily. Lana. And Daniel.

The girls, 5 year-old Emily and 3 year-old Lana, both have the coolest dress sense, their favourite dolls, their princess costumes and their constant companion, Cystic Fibrosis.

  

One-year-old Daniel doesn’t have Cystic Fibrosis. But based on the positive and pragmatic way Zoe and David cope with their daughters’ disease, there’s a danger in the years ahead that Daniel might actually feel left out by not having CF.

Emily and Lana’s family life could be measured out and categorised by the unrelenting daily medication regime; by their need to take enzymes with every meal so they can digest their food; by the need to constantly avoid infections; by the need for constant physiotherapy to keep the girls healthy and strong; by the twice-daily sessions on their nebulisers. 

But instead their lives are defined by a pure and simple love. By the lively and normal domestic routine that transforms a medicalised house into a home. The Woodward parents’ lives are driven by a dignified but resolute refusal to accept low expectations for their children.

You often hear people say that children are the future. But if you’re a child with Cystic Fibrosis, life is all about what’s happening right now.

Because Cystic Fibrosis is a cruel disease. It takes away years of your life. And it takes away life from your years. Because of the unbearable and worsening symptoms, it can make the shorter number of years you have, very difficult indeed to cope with.

But here in the National Children’s Research Centre at Our Lady’s Children’s Hospital, Crumlin, Shield CF is set to change the face of CF care and treatment in Ireland for the present and next generations.

Our immediate problem is, we desperately need to raise funding to make sure this vital research continues, builds the impact that’s needed, and thrives.

If this happens, it will make such a difference to vulnerable and very-ill children with CF who will have a much better and healthier quality of life – and because of that improvement – will potentially have much longer lives.

 Will you become a Research Champion on Cystic Fibrosis?Please make a gift today to help children like Emily and Lana live the most fulfilled lives.

According to the statistics on CF, Emily and Lana will have far shorter lives than their friends. But for David and Zoe, the life expectancy for their two beautiful daughters isn’t measured in time, it’s measured in the stuff of life – in games, fun, education, chats, activities. In small increments of love. In big hearts.

But it’s also measured in a simple and sober demand. A demand that is as relevant for you and me and Ireland as it is for the Woodwards. A dignified demand that Emily and Lana should quickly reap the benefits of the best research in the world. 

That’s their birthright. That’s what we in the Children’s Medical and Research Foundation are committed to. That is why I need your inspiring help.

Please give generously to fund this truly landmark research project. Help our researchers cross the bridge from laboratory to bedside and make the quality of life – and future – for children with CF so much better. So much longer.

When Emily was first diagnosed with CF, Zoe* was given a leaflet. She held it in her hand for fifteen minutes.She just couldn’t get past two words – ‘life threatening’. Today, though the shadow of CF still hovers, Zoe has got past those words. She’s now thinking about two other words. ‘Life affirming.’

  

Please help us affirm thousands of young lives through this wonderful research programme. Affirm your support with a wonderful gift today.

Thank you so much,

Joe Quinsey

CEO, The Children’s Medical and Research Foundation

Our Lady’s Hospital, Crumlin

 

Zoe’s story and appeal on behalf of her daughters, Emily and Lana.

“It’s clear now that the words life-threatening still haunt me.”

Our children, Emily and Lana, will never know what it’s like to live without a terminal illness. Cystic Fibrosis will never define them as people but it will steer decisions and steps they make.

They are born with a life sentence. One of the ways to lift or ease this sentence is through support for vital research in order to discover new ways of alleviating symptoms or curing Cystic Fibrosis. You can play a vital part in achieving this.

Healthy children can die at any time, often tragically, but when you have a child with a terminal illness, death becomes a sooner certainty. Our children’s future – and the future of hundreds of Irish children with CF – depends on proper medical care and the highet quality research programmes in the lab and at their bedsides.

I’ve studied the issue of research on CF around the world. I really believe we are at a turning point. Major advances – driven by numerous small breakthroughs and learnings – can change the lives of children with CF. I believe this SHIELD CF research programme led by Dr Paul McNally, who has taken such dedicated and selfless care of my daughters, is an initiative that is so bright, so cutting edge and so needed. But it needs the support of many inspiring and kind people like you.

Please make a gift to make real this absolutely vital work to save, improve and extend the lives of children living with CF.

Thank you so much.

Zoe Woodward.