Town is united for brave boy Christy

Q&A: Owen Barry
Town is united for brave boy Christy

It is a picturesque village, famous for the remains of the Franciscan friary founded by Donal Glas McCarthy in the 14th century, and the fine Spanish wine which its position, on the shore of a creek, made it easy to land. And, like many West Cork villages, Timoleague has a strong sense of community and a tradition of looking after those in need.

This support has been much in evidence of late, as local residents have joined to support two-year-old Christy Barry, who has juvenile Myelomonocytic leukemia (JMML). JMML is a very rare cancer of the blood, which occurs when too many immature white blood cells, called ‘myelocytes’ and ‘monocytes’, are made in the bone marrow and crowd out the healthy cells that belong there.

JMML accounts for 1-2% of childhood leukaemia cases each year.

In the US, only 25-50 new cases are diagnosed each year, which equates to about three cases per million children. This chronic cancer mostly affects children who are four years old or younger; the average age of diagnosis is two.

To discover that your child has a serious and life-threatening illness must be devastating.

And to know that, apart from seeking the best medical advice and help you can find, there is very little that you can do, takes its toll on parents, extended family and friends.

But the kindness of others can make this experience easier to bear. The Children’s Cancer Research Fund in America tells the story of Jillian who, just after her fourth birthday, was diagnosed with B cell acute lymphoblastic leukaemia.

Jillian immediately started receiving chemotherapy, predicted to last for two or three years.

Dealing with her illness has changed her family’s lives, as they must always assess whether Jillian can participate in every-day family events, based on whether benefits outweigh potential risks.

Yet, despite these challenges, her parents, Luke and Megan, and sister, Delaney, have experienced incredible kindness from their friends and neighbours, and say that they feel closer together as a family unit.

The immense generosity and acts of kindness they have been shown, sometimes by complete strangers, have helped them through Jillian’s on-going treatment.

Connor Dykes is now seven years old and has survived a brain tumour. Rushed to hospital when he was just six weeks old, his survival was described as a miracle. Connor’s tumour was the size of an adult fist.

But despite the risks and the warning that Connor might not survive treatment, the four-hour operation was successful; within ten minutes of his parents entering the recovery room, Connor had opened his eyes. Today, he is a ball of energy.

As is nine-year-old Sydney, who says she wants to perform in a rock band, run an ice-cream shop, and be President of the United States, not necessarily in that order. And because of on-going research, the options available to treat her retinoblastoma have given her the chance to realise her dreams. “Sydney survived cancer, thanks to a cutting- edge treatment that wasn’t available five year’s before her diagnosis,” says her mother, Lisa. “Research made that treatment option possible at the Minnesota Children’s Hospital. We hope Sydney’s story is one of hope, and a reminder to other families that they don’t have to be alone during what is the most ter rifying time in their lives.”

Research is a fundamental component of paediatric disciplines, and essential to advancing medical and scientific knowledge.

Our Lady’s Children’s Hospital Crumlin, in Dublin, where Christy Barry is being treated, promotes research on all areas of interest to paediatric medicine, so that the care of sick children will be the best possible.

Christy’s father, Eoin, a marine engineer, told me of his family’s experience and how the support of their community is helping them to cope.

¦ When did you first realise Christy wasn’t well, Eoin?

>> “It was last summer. He developed a rash and, at first, we thought that he was just allergic to something. We took him to several doctors, but we didn’t get anywhere. My wife, Alina, wouldn’t give up, though. She kept saying she knew that there was something serious wrong with Christy. In the end, he had a blood test at CUH, in October, and he was in and out for a week. Then, they referred him to Crumlin and we were shocked. Our world was ripped apart when they told us that Christy had JMML. It is very rare.”

¦ What did you do then?

>> “Well, we were delighted that the hospital were talking about treatment and we realised that we had to form a plan of action. The only treat-ment for JMML is a bone marrow transplant. But that’s far from straightforward. There’s lots of stuff that has to be matched. Eventually, we found a donor in Germany and, between the re-search programme there and Crumlin, Christy had the transplant. Now, we are part of that research programme. And, of course, we were so pleased to have found a donor, but it’s been very rough on him. It’s a rough process, especially on such a small child. And recipients always get worse before they get better. But it’s the only treatment for JMML.”

¦ How did he respond?

>> “They blasted him with chemotherapy; sometimes, his temperature is through the roof. It’s hard to see him just lying there. They’ve got him on every antibiotic going; he’s in total isolation, in a special room. It’s very hard. But if we break down, what will happen to him? We have to be strong for his sake.”

¦ Does insurance cover something as catastrophic as this?

>> “No, not really and it’s not even the medical care that pushes up the costs. It’s everything else — travel, accommodation, missed work. It all mounts up. But we have been very lucky with the support we’ve got. The coffee morning our friends and neighbours organised recently raised €7,000. We’ve had a Kids Fun Day and my brother, Eamon, is organising a 5k walk and a 10k run and that support means everything to us. Now, all we can do is watch and wait and thank the fantastic staff at Crumlin, who are taking such good care of our little boy.”

¦ A charity run took place in Timoleague on Sunday. For more information on making a donation towards Christy’s care, contact Christy’s uncle, Eamon Barry on 086-8518335.

¦ www.nationalchildrensresearch centre.ie

¦ www.olch.ie

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