Opinion

We must get our priorities right

Tom Kelly

Tom Kelly

Tom Kelly is an Irish News columnist with a background in politics and public relations. He is also a former member of the Policing Board.

As a weekend presenter on Q Radio, I have had the pleasure of interviewing many interesting people such as the indefatigable Dunkirk veteran, Neville Henshaw, the sprightly nonagenarian Down GAA legend, Barney Carr, the resilient John McAreavey and the tenacious Anita Dennison, the teenager who fought back against bullies by establishing a website to support other victims.

It’s a privilege to listen to these ordinary folk tell their extraordinary stories so humbly and without any sense of self-awareness or self regard. It’s a stark contrast to the hubris and self-inflated egos of many of our corporate and political leaders.

Last week we witnessed some loyalists and republicans get all worked up over flags and marches once again. And again the police suffered the brunt of their intransigence. At what point will protestors and marchers realise that the rest of the world is occupied with real issues such as economic security, health and well being?

Which takes me back to the extraordinary narratives of those ordinary people trying to cope with real difficulties and who have shown incredible courage and fortitude in coping against terrible odds. On Saturday past I interviewed just two such people who graciously have allowed me to share their stories.

The first was a lady called Fionnuala, who is a volunteer with the Northern Ireland Rare Diseases Partnership. But more about the partnership later. Fionnuala worked as a nurse and midwife in the health service for over thirty years before being forced to take early retirement due to her illness. She suffers from Behcets Disease; it’s a rare disease in the UK affecting around 1000 people. Given that Fionnuala was not properly diagnosed until she was in her late thirties, one can surmise that there are many more sufferers still undiagnosed. Behcet’s causes blood vessels and tissues to inflame and tear leading to ulcerations and swelling of joints. As a child she lived a life filled with doctors appointments and hospital visits as she was passed through the health service without anyone really knowing what they were looking for. Unsurprisingly, her parents were distressed and distraught watching their daughter suffer –especially without proper treatment. That Fionnuala lived a full life working in the very health service that failed her is testimony to her forbearance. Despite having some difficulties walking, Fionnuala has a bright and bubbly personality and now works as a volunteer both for the local Behcet support group and the NI Rare Disease Partnership.

The lady accompanying Fionnuala to the Q studio was a young mother from Bessbrook called Kerrie. Kerrie and her husband have a sixteen-month-old son called Matthew. Matthew was born with a rare disorder known as trisomy 13 or trisomy D. It’s a chromosomal abnormality which results in a third set of chromosomes that cause multiple and complex organ defects. Already the clinical and cold definitions of the child’s condition are as frightening as they are mind-boggling to the ears of a layman. What parents must feel is indescribable. As Kerrie was diagnosed during her twenty week scan- she and her husband spent agonising months awaiting the birth of Matthew- a yet unborn baby described by consultants as having a "condition incompatible with life." That term in itself must cut across the very hearts of every parent. Only as Kerrie described her story, I began to recognise the condition too. Only I had known it has Patau Syndrome –which a few years ago took the life of my niece Grace. Such a diagnosis is something, which I know from personal experience, touches the lives of grandparents, aunts, uncle’s brothers and sisters, but most acutely parents. Patau syndrome affects about 1 in 10,000 pregnancies and 1 in 21,700 births.

It’s an isolating and gloomy prognosis too because of the uncertainty about the child surviving pregnancy and more so because of the lack of knowledge and knowledge sharing about the condition. Matthew, from his photos looks a happy child who very day defies the odds of his condition. His mother says his smile can light up a room. Unknown to me my brother out of the pain of his own experience has been offering support to Matthew’s family. And that’s at the core of Kerrie and Fionnuala’s stories; the Northern Ireland Rare Disease Partnership was formed to demonstrate to sufferers and carers alike that they are not alone. Northern Ireland has over 100,000 people suffering from rare diseases and the Partnership provides advocacy and support through voices like Kerrie and Fionnuala, people who have their priorities in the right order.